One topic, AV node ablation, makes the rounds of the atrial fibrillation discussion groups on a regular basis, and has just come back around again. All at about the same time, several afib patients’ doctors have insisted that they have an AV node ablation with a pacemaker implant. Thus they have come seeking others’ experiences.
In this procedure, the AV (atrio-ventricular) node is frozen or cauterized to stop electrical signals from being transmitted from the upper chambers, the atria, to the lower chambers, the ventricles, and a permanent pacemaker is implanted to control the heart’s electrical system.
Supposedly, at least according to some doctors, the AV node ablation will eliminate afib, or at least patients won’t feel it any more. Wrong, say many who have had the procedure. They still feel it, and they are just as miserable.
And whether or not you feel your afib, it’s still damaging your heart, and you’re still at risk of blood clots and strokes. Thus you’ll probably still be on anticoagulants, such as Coumadinâ or warfarin.
I don’t have anything against pacemakers – they do a great job of keeping people alive and of detecting irregularities. We’re lucky to have this technology.
But please, please, just don’t sever that AV node that connects the atria to the ventricles. It’s so FINAL. You probably won’t be able to take advantage of advances in medical technology, and if there’s a problem with your pacemaker, you darn sure better be able to get to an emergency room quickly.
So, lets see…
- you’ll still have afib
- you’ll still be at risk of strokes
- you’ll probably still be on Coumadinâ
- you’ll be pacemaker-dependant
- you may not be able to take advantage of advances in medical technology
Now, why is it you would WANT an AV node ablation? Duh!
This controversy seems to be pitting patients against their doctors. One mentioned that her doctor thought she was obstinate for not wanting an AV node ablation. She’s not being obstinate. It’s her body, and she gets to make the decisions. She doesn’t want one, and considers the procedure prehistoric. She’s right!
Maybe for some patients it’s the only answer. But I suspect that applies to far fewer patients than actually get the procedure. Is this just another case of Clueless Doctors who are just not aware of what afib does to us? Or are these doctors unaware of all the other Options Available? Or is it an economic decision? I sure hope not. Is it naïve to still believe that doctors want the best for their patients and will help them find a cure?
What has been your experience regarding AV node ablation? You’re welcome to join our discussion or share your thoughts and comments below. Thanks.
I have had AV nod ablation and a pacemaker,but the Doctor said I was not pacemaker dependent. Can this be?
I had an AV node ablation about 5 months ago. I was told that I am now totally dependent on my pacemaker. From everything I have read, that is true. I have not read anything that says you aren’t dependent on the pacemaker. I am a new person since having it done.
I have had Afib for two years and I am on deltizam 360mg per day . This controls my blood pressure and heart rate–rate control . I have been recommended an AV node ablation and pacemaker as the best treatment to cure my Afib . When I last had a follow up visit with my cardiologist I mentioned pulmonary ablation using a Stereotaxis or Hansen system and he asked what those systems were !
Maybe you need a new DR?
Is he an EP? If not find one, and make sure he has heaps of experience. Ask the difficult questions
AV Node Ablation is a last resort in my estimation.
Terry,
You said: “I have had AV node ablation and a pacemaker, but the Doctor said I was not pacemaker dependent. Can this be?”
The AV node ablation burns out the heart’s natural pacemaker, and the implanted pacemaker takes its place. It doesn’t make sense to me that you would not be “pacemaker dependent.” You might want to ask your doctor to clarify further.
Mellanie
Richard,
It sounds like your doctor is not keeping up. Maybe it’s time to find an electophysiologist (a cardiologist that specializes in heart rhythms).
Mellanie
My afib started when I was 50 years old. I was on many drugs including Amorodian. I was in and out of the hospital sometimes twice a month. My cardiologist finally suggested an ablation. I had to have 4 ablations to finally stop my afib. After the first ablation I had to have a pacemaker. But now, life is great. Instead of spending time running to the emergency room, I have my life back. I feel absolutely nothing and have had a great quality of life that I didn’t have before. Yes, I still have to take coumadin but it is better than going to the emergency room and always being scared to death what was happening with my heart.
Lois,
Congratulations. I’m glad that you found a solution that worked for you.
Mellanie
So, if I have ablation, I will need a pacemaker
Moises,
No, you don’t need a pacemaker for a Catheter Ablation. You do need it with an AV Node Ablation.
Yes, it’s confusing, so please read http://www.stopafib.org/catheter.cfm to understand the difference.
Mellanie
Mellanie,
My father just had the AV node ablated and pacemaker put in. He is 80 years old and when they 1st tried ablation at clev clinic 6 or 7 months ago they said he had so much scare tissue and short circuits in his upper chamber that they would have done AV node ablation and pacemaker right then and there if pre surgery authorization had been given. So they waited a while to see if it took. It did help a little but it persisted. The surgeon was worried that my dads persistent afib would wear out his heart (i forget the tech term), and so were we, and it made sense. they tried all the latest and strongest drugs before and throughout. I just now see you article of caution and got worried, but i think at 80 my dad did not have time to wait for the next advance as this was taking a toll on his heart. I appreciate your comments, there is logic especially in the finality of it for a younger person, but persistent AF is not a good thing, right? Do your words of caution change as a patient gets older and more frail? This was just done yesterday and dont know yet how well it is working out. We thought it was the right thing, but your article has me a bit worried.
PS: Mellanie, what is your medical background or experience?
A worried son,
thanks,
david
Hello David,
My mom’s cardiologist is highly recommending she get an AV Node ablation. My mom is 73 years old and has heart failure and her AFIB is worsening her heart failure. Would you please let me know how things are going with your father after the AV Node ablation? Is he doing ok or does he regret getting it done.
We’d appreciate any feedback you can give us about his experience. Thank you
David,
I’m sorry for what you and your Dad have been through. In your Dad’s case, this was probably the best option.
Generally catheter ablations and surgeries are done up until about age 80, though some over 80 have done quite well.
However, with extensive scar tissue, a failed ablation, and the risk of heart failure, the AV node ablation was a reasonable choice.
Surgery is always another option, but with the extensive scar tissue, it may not have been a good choice in this case.
What bothers me is when AV node ablation is chosen without these kinds of issues in a younger person that will have to live 30, 40, or more years with a pacemaker and will be unable to take advantage of advances in medical technology. It does happen.
Regarding my background, I clarify on our parent site, http://www.StopAfib.org, that I’m not a doctor or a clinician. I’m a patient who survived afb. With my scientific background, I have dug in to learn as much as possible about afib and treatment options to help others who don’t have the time or inclination to do the medical research. It’s about helping others get the education they need to partner with their health care team.
Good luck to you and your Dad.
Mellanie
Hi I would like to hear more , I’m waiting on a possible av node aboulation and having 2nd thoughts
Joe,
We encourage reviewing the many posts here to learn about other people’s experiences.
Hi -I’ve just learnt that my son has been in a fib for the last seven years – he has had a pacemaker for twenty-two years because of complete heart block after surgery for a congenital heart condition. He also has a prosthetic mitral valve and is generally leaky around other valves. I have a feeling I have seen research which suggests that long-term pacemaker dependency causes afib and cardiomyopathy, but don’t understand how this can come about. Anyone know?
Hazel,
I’m sorry about your son’s afib.
It’s quite possible, though I haven’t run across anything suggesting that afib is caused by long-term pacemaker dependency.
With the multiplicity of concerns, it might be worthwhile speaking with a cardiac surgeon who understands all of these areas and can help. I know that when you fix one, you’ll likely want to fix them all.
Good luck with this.
Mellanie
I had an AV oblation 5 yrs. ago and a one lead pacer implanted after dealing with many trips to the er and so on. I’m now 70 and I’m concerned that my left ventrical is tiring. I’ve had sleep studies – negative, pulmanary breathy tests – normal and still find I get out of breath doing usual normal things. I was surprised to understand that after removal of the AV node there is a total disconnect to the ventricals.
I’ve talked to my doctor about another lead on the pacer to help the right vent. assist. I’m still in AFib, which you know and on Coumadin. I still feel palpatations and sometimes I know my pulse is out of sync. I’m recently getting a 2nd opinion about the 2nd lead. I feel there is something still not right but I don’t know what.
p.s. I had no idea that oblation of the AV Node was not such a great idea. You are right, with newer procedures, resynchronizing (3 leads) it is new on the
use of the pacemaker. My sister just had it done and she is 69 and feeling great. A major change in her general health.
Any comments would be appreciated.
Thanks, mme
What is ” resyncronizing?
Hi To All,
I have a question.
Are there any minerals, amino acids or vitamins that cure afibs? Does excersisie and meditation help?
I refuse to have my heart cut ,burned or electricuted.
I eagerly awaite your responses
To better health.
Eric
Mellanie,
I am an electrophysiology PA.
Please don’t forget to tell your bloggers that persistant pacing of the right ventricle (like after av node ablation) can cause the heart to weaken and potentially lead to Heart Failure.
Please refer to “the DAVID trial.” . . . “in this trial it appeared to increase the combined end point of death and hospitalization for heart failure.”
Thank you,
Hi there .. my mom have AF and Right atrial enlargement .. also with condition named Hypertrophic obstructive cardiomyopathy (hocm) .
She is 59 years old..
Some doctors advised her to do normal ablation to cure the afib but with a 50% chance to the operation to be successful.
And other doctor advised her to do a av node ablation with peace maker it would be better with her “hocm” condition.
I hope anyone here could help me to decide which ablation is better for here am very confused.
Hi M,
Can you please elaborate on how your mother’s HOCM is being treated, as that is likely the factor controlling how the afib should be treated?
You may be interested in joining our patient discussion forum (http://forum.stopafib.org/index.php) to connect with other patients who collectively have a great amount of knowledge and experience. You may want to post your story and questions there, and you may also learn a lot from others who have already shared their experience.
Furthermore, you’ll need to join to see and participate in the discussion. To do so, go to forum.stopafib.org, and click on the big red button that says, “Sign Up”. Once you sign up by registering your email address, your preferred username, and a password, you’ll receive an email to confirm your interest in joining the forum. Click on the confirmation link in that email, and you are ready to go. You’ll be able to log into the forum, read the discussions, and participate. I hope that you can find others to connect with there who can give you advice, suggestions, and hope.
But my electrophysiologist pa told me that he puts ablates the av node and puts 3 leads (2 in the ventricles not just 1 inThe right ventricle ) so how eould tgat cause heart failure?
What are thoughts on a mini maze
Margaret,
It sounds like a second opinion is warranted to figure out if anything else can/should be done. Good luck.
Mellanie
Eric,
You asked, “Are there any minerals, amino acids or vitamins that cure afibs?”
Some folks that have lone afib (no underlying heart disease) have had good results with supplemets and diet. You can learn lots more over at Hans Larsen’s Lone Atrial Fibrillation Forum – you’ll find the link in our list of Afib Forums on the right side of this page.
You also asked, “Does excersize and meditation help?”
Some people have had good results with meditation and breathing control – there’s some discussion of that on the Lone Afib Forum as well. Exercise can help some people, and triggers afib in others, so that’s something that is very individual and you may have to experiment with. Remember, all things in moderation.
Good luck.
Mellanie
i am going to get an ablation.I cannot tolorate tha medicine anymore.Where can i find the best doctor around illinois to do it.What is the best hospital.Is there any guides to go by that rates the best overall people to trust for the procedure.I only get arrythmia sometimes but the medicine is makeing me very sick and i have tried afew and my doctor said my options are limited.
Patrick,
We’re doing an atrial fibrillation patient information program in Chicago (Schaumburg) March 7. Can you wait that long?
We’ll discuss treatment for afib, including catheter ablation and surgery. Here’s where you can find out more:
http://www.stopafib.org/newsitem.cfm/NEWSID/138/
Feel free to e-mail me privately to discuss doctors in IL.
Mellanie
Patrick,
I am an Electrophysiology PA.
I assume you are talking about an AV Node ablation with pacemaker implant. If so, see my note above.
Before you procede, please look up Pulmonary Vein Isolation on Google. Most cardiology groups with an EP are doing this -potentially curative- procedure these days. It is a great way to cure a “paroxysmal atrial fibrillatior” like yourself without putting you at risk for heart failure.
I have seen too many bad things happen when a doc performs AVNode – Pacemaker.
Good luck, Jeff
Hi Jeff. Thanks for the info. My dad is 82. He just had a pacemaker installed 6 months ago due to afib & heart flutter along with a cardio version. For the past month, his heartrate has been between 118 & 139, 24/7. He is on 400 mg of Metropolol and Lasix/Spiralactone. Now he has developed what looks like vein hemorrging on both legs. The doctor said ablation will only be 60% successful but av node ablation 99%. Help please! What should we do?
I gad an ablation after i was told 75% success rate. But it did not work to fix my afib! I still had episodes if tachycardua etc. And now im in permanent afib ! Afib is a progressive disease ! It Takes about 44 mos to become “permanent afib”
which for me it was 40 mos So common sense says how can burning ur pulmonary veins cure afib which is caused by ur sa node. Electrophysiologist now wants me to do av node ablation/ pacemaker. But im not in heart failure which is a ef score of 40 Thi k ill pray for stem cell sa node
What bad things happen? With avnode/ pace
Dear Mellanie,
A year ago I had AV node ablation because of frequent trips to the hospital with Afib and taccardia, extremely high blood pressure and medication no longer held me in sinus node. I have done well since then but
am now having very hard knocks in my heart, like bangs. Also, when I lie down at night I feel like a bunch of bricks are weighing my chest down. Are these two symptoms normal? Or can something be done? I am on Coumadin and Labetalol.
Thank you, Lioba Hanley
Dear Mellanie,
Four years ago I received a pacemaker because my heartbeat was usually at 40. Last year I had an AV node ablation because no medicine would continue to keep my heart in sinus node. I have Afib and had taccardia with extremely high blood pressure when taccardia set in. I wa was hospitalized many times with Afib and taccardia. I have found much relief, especially from frequent hospital visits. But now I am having trouble with pvc’s and Afib. Often I have “banging” around in my heart. At least if feels like it. And I have pvc’s. At night when I lie down it feels like I have a pile of bricks on my chest. Are these symptoms usual for patients like myself? Is there anything I can do to quiet them? I am on Labetalol and it does help some. I should mention that I was on Amiodarone for a few years to try to keep me in sinus node and before that, other beta blockers.
Thanks you, Lioba
Lioba,
The “pile of bricks” on your chest sounds scary–that’s often a heart attack symptom, or might be due to lung damage from amiodarone.
The banging around sounds scary, too, but I don’t know what that could be. Please get to your doctor immediately to find out what is going on.
I have heard that sometimes you can have surgery for afib even after an AV node ablation, so you might want to find a surgeon. If possible, see an integrated center that has EPs and surgeons that team together to find the right solutions for you. You can search for Afib Services in your area by going here:
http://www.stopafib.org/find.cfm
Good luck.
Mellanie
I told some critical care nurses I had an ablation for AV node re-entrant tachycardia and they never heard of it. It is supposed to be a fairly common reason to have an ablation. I am so thankful to have seen a sign board which said “Prairie Heart Institute”. Top 5 in the nation. They cured me there. I thought I was going to die and no one would be there when I did it. Dr. Kreigh Moulton is a genius. He fixed my broken heart.
My husband has been battling cardiomyopathy and Afib for the last 7 years. He is only 48. We’ve had 2 ablations, been flown to several heart centers, had more conversions to even count and he will make gains in feeling better and then take losses in his heart infraction rate. We are staring down an av node ablation and pace maker on the 7th of July( last severe ablation happened in March and only help for a few days) Has anyone done any research on the “Maze” procedure verses AV node ablation? This was suggested to us a couple of years back when my husband was in intensive care at UNC heart center with complete heart and renal failure? Is this a viable option before a 48 year old man kills the “natural” order of his heart for a “man made” pacemaker? Anyone have any info please anything feedback will be appreciated!
Donna
Hello I’m Rob 52 years old just had an AV node ablation and pacemaker fitted after 12 years of flutter and AFib along with 4 cardio versions and 7 ablations heart rate was normally between 150 -160 constantly and one stage 266 I had my procedure done two weeks ago in Christchurch new Zealand an amazing team down there with top cardiologest matt Daley heart rate great now sitting on 80 and in a couple of months they will drop it to 70 BPM but at the moment I’m experiencing a lot of feeling bloated mybe a side affect or still part of the recovery cheers
My mother-in-law is taking amorodian for her heart problems. Now she has developed pulmonary fibrosis. Is it well known that this heart fixing drug causes lung problems?
Dot,
Yes, it is well known that amiodarone can cause pulmonary fibrosis and a number of other very serious problems. Doctors should be mentioning this to patients, and testing for a number of issues while patients are on it.
In my testimony before the US FDA Advisory Committee, I talked about a number of issues that afibbers have had to deal with from taking amiodarone. You can read more of that here:
http://stopafib.org/newsitem.cfm/NEWSID/151
The FDA has approved an amiodarone replacement, called Multaq (dronedarone), that is not toxic, but is slightly less effective than amiodarone. It became available in US pharmacies this week. You can read more here:
http://stopafib.org/newsitem.cfm/NEWSID/180
Mellanie
Be careful with Multaq (dronedarone). Someone starting on it should be monitored for at least the first 48 hours. My father started on it last Friday. ~18 hours after starting, it dropped his heart rate from about 80 (resting) to 50 which made him feel extremely short of breath and his blood oxygen fluctuated wildly, dropping down to below 70% (the lowest reading possible on the pulse oximeter) at times. And he has an SJM pacemaker (with the AF suppression algorithm) to provide rate support. Oddly enough, the base rate of the pacemaker is set to 60 bpm so it’s unclear how/why his pulse dropped to 50. He stopped taking it for 24 hours then reduced the dosage by half (to 400 mg/day). He feels better, but still has lots of afib. He is still undecided whether he will continue on it.
After 3 years that has included, 3 ablations, 5 cardioversions, and three different drug therapies, i don’t think the pacemaker is a bad idea. As i have researched some material on pacemakers, there are some cardiologists and electrophysiolgist that share the view that some cases of A-fib cannot be cured regardless of how many times the patient has had the abaltion surgeries or drug therapies coordinate along side them. I am 51 years old and i could only see the pacemaker as a postive hope now. It certainly can’t be any worse than the last 3 years have been.
Zac,
Thanks for sharing. I hope your Dad is fine now.
Was your Dad also on beta blockers? I’ve heard of a couple of cases where patients’ heart rates dropped, but were fine once their doctors adjusted (or discontinued) their beta blockers because Multaq has beta blocking properties, too.
Mellanie
Robert,
I’m so sorry about all that you have been through.
Regarding the failed cardioversions, is there any chance that you have sleep apnea. Untreated sleep apnea is a common reason that cardioversions fail.
In addition to catheter ablations, there are also surgeries – mini maze and maze – that cure many people, especially those that have afib that comes and goes, or that have had afib for only a few years. You can learn more about them here:
Maze: http://www.stopafib.org/surgical-ablation.cfm
Mini maze: http://www.stopafib.org/mini-maze.cfm
Pacemakers, in and of themselves, are good. It’s when they do an AV node ablation, which is final, that it’s a concern. That way, you really can’t take advantage of advances in treating afib. You’re pretty much stuck.
With you being in your early fifties, there will be so many advances in your lifetime in treating afib. You should be able to take advantage of them.
Good luck.
Mellanie
I believe that if anyone is having second thoughts about their treatment for afib, they should be going to a different cardiologist for a second opinion. I am a Cardiac Stepdown RN, and I do not agree with what is being stated about the AV node ablation. Just because a person has had afib, doesn’t make them a clinical expert. Everyone has opionions. If you have questions, please ask an expert, meaning someone who has clinical experience with the disease, i.e. doctor, cardiac nurse.
Brown,
That’s the point exactly – don’t just blindly go into an AV node ablation, but instead get another opinion.
Would you recommend an AV node ablation for a 40 year old woman with afib and no other problems who has failed one medication and hasn’t had a catheter ablation or surgery yet? That doesn’t seem to make good sense, but we know of several who almost followed the first doctor’s directive and had AV node ablations.
We just want folks to know to ask a lot of questions, and get a second opinion if needed. This info comes from several patients who had the procedure and wish they hadn’t as they are much worse off now. They tell others not to let it happen to them.
We appreciate your opinion.
Mellanie
I’ve had afib for about 6 years. Took and failed 3 medicines and had 2 cardioversions. I went to UCLA Medical for 2 pulmonary vein ablations–unsuccessful. A year later, I had a mini MAZE procedure–in sinus rhythm for about 2 months. Took 2 beta blockers–sotolol and metotropol (sp) and they slowed me down where I was non-functional. My afib turned into a-flutter. Had another ablation procedure in April 2009–redult, left atrial tachycardia. My heart rate is at 100-114 daily at rest. Had another cardioversion in July 2009–sinus rhythm for 1 week. Back with left atrial tachychardia. I was on drondarone for about 3 days in Nov 2009. Did not like the side-effects, i.e, bloating, weight gain, tiredness. The last EKG on Tuesday Dec 1 showed that I have both afib and a-flutter. The consulting cardiilogist recommended “the quick and dirty” (his words) AV node ablation with pacemaker or go to Michigan and have another catheter ablation with “one of the best cardiologists in the USA”. Success rate, however, he said, was 40%. I’m 59 years old. The quality of my life has been drastically affected, i.e, weight gain, tiredness, etc. I have 2 new grandchildren and I am exhausted when I play with them. I’ve run and finished 18 marathons and have been active in water sports all of my life. My daughter, mother of my grand kids, wants me to have the AV node ablation to improve the quality of my life so I enjoy my grand kids and my life. The thought of going to another strange hospital in Michigan does not please me. However, Iunderstand that the AV node ablation is permanent and that door is close done I walk through it. I see my treating cardiologist next Tuesday. I will have to pray for guidance. Anything you can recommend will be helpful. Thank you for this blog.
Hi,
I have had afib for around 10 years now. I have had a dual chamber pacemaker inserted a couple years ago, also had 2 radio therapy abilitations.
These RTA’s have not cured my afib, the next step they are considering is to burn away the Av node.
I’m still unsure if i really want to go down this road, but i cannot go on the way i am just now.
I have been cardioverted over 20 times in the last few years…
My electrophysiologist states that he would have to overdose me with radiation to do the pulmonary vessel ablation due to my ‘thick’ body. I have had paroxysmal atrial fib, uncontrolled rate, and I can feel it, since 1997. I am now 54 years old.
I also use a CPAP and am on 3 meds that have been upped in strength over the years. The uncontrolled rate is what is so difficult. I have asthma as well and can hardly do anything any more.
I liked the way you have approached the subject of AV nodal ablation in setting of atrial fibrillation. This is not a procedure that is recommended to all patients with atrial fibrillation. In the EP community, we usually offer AV nodal ablation with pacemaker implantation to elderly patients with chronic atrial fibrillationwho have uncontrolled ventricular rate inspite of being on medical therapy.
We usually implant a pacemaker then wait about three weeks and then proceed with ablation of AV node. Patients above age 75 years report a sense of well being and medications that control ventricular rate(such as beta blockers, cardizem, verapamil, digoxin) can be discontinued.
Most people with AF are over 70 years old and want a simple procedure with a high success rate which will relieve their symptoms at low risk. If you look carefully at the published results of left atrial ablation in continuous AF the success rate (no AF, no drugs) is barely 50%. With AV node ablation the success rate is about 95%.
For younger AF sufferers it should also be understood that there is NO information on long-term (10 year) effects of left atrial catheter ablation – recurrence or complications, whereas we have 20 years experience with AV node ablation and pacing.
When people do have symptoms after AV node ablation it is often because the setting of the pacemaker has not been optimized to provide a natural heart rate when resting and with exercise.
Obviously it is theoretically better to prevent the AF than just to mask the effects but these practical issues are important as well.
Jonathan,
The facts you’ve stated may be the case in the UK, but may not be the case here in the US. While many afib patients are 70+, a huge and growing segment ranges from their thirties to their fifties and sixties. Those folks just should not be resigned to an AV node ablation, even those with persistent AF.
While success rates for those in persistent AF may not be high for catheter ablation, surgical success rates are higher for them.
AV node ablation has a place for those who are too frail and elderly for other procedures, and may give them some relief from afib. But for those who can have other procedures, why should we relegate them to life with constant afib? That seems cruel. I wouldn’t want that – would you?
Mellanie
Pinnacle Security,
This is a long overdue comment…just wanted to clarify that an AV node ablation is different from an ablation for AV node re-entrant tachycardia (AVNRT), where they ablate the source of the fast heartbeat instead of knocking out the AV node itself.
I’m glad that Dr. Moulton cured you. He’s a great guy – I sat next to him, and his wife, at Boston Atrial Fibrillation Symposium a couple of years ago.
Mellanie
Hi-
My son just had a radiofrequency heart ablation done this past week. He will be 5 at the end of March! He was born with SupraVentricular Tachycardia and had been on high doses of Amiodarone until 2 weeks ago. Our EP doc said that while in his procedure, they noticed his AV node pacing as well. I was told they do not do anything for the children right now and that it wouldn’t regularly show up until his “teen” years. I was told that it only showed up during the procedure because they had given him so many different meds to try and trick his heart to find the original pathway that they were looking for to begin with. I’m just looking for anyone who has gone through this before or who has any suggestions! I just want to be ready for if anything were to happen to the little guy and we need to seek immediate treatment. Thanks so much in advance!
Amy
Dear Zac
A possible reason for your father’s pacemaker to have allowed his base rate to drop to 50PPm would be that he has a hysteresis or rest rate setting programmed on which would mean the pacemaker was working appropriately. You could check this with his pacemaker follow up centre.
Amy,
I’m so sorry. It’s hard enough to deal with afib as an adult. I just can’t imagine what it must be like for you and your son. I’ve heard from very few parents about children with afib. There is an organization called Parent Heart Watch (http://www.parentheartwatch.org/) – I wonder if anyone over there can help with your concerns about the AV node.
If you would like to have a discussion group on our StopAfib Discussion Forum (http://forum.stopafib.org) for parents of children with afib, I know several folks who are dealing with that issue and might also be interested. Just let me and we can set one up.
Good luck.
Mellanie
My dad is 80 and just had the AV node ablation, and it didn’t work. He already had a pacemaker for several years, but theAF started about two years ago. They tried meds but he is very sensitive and gets all the awful side effects, cardioverting more than once, did an oblation once, and now they did the ablation. He is still symptomatic, still feels the a-fib and was actually feeling worse than ever! After 9 days he went back into the hospital and now they are trying a med the nurses say is what is usually tried first but they never did for him.
We don’t know if this is going to help in the long run or not.
My husband was diagnosed with congestive heart failure about 5 years ago. Consequentially, he has had several arrhythmia problems. He has had 4 (no, that’s not a typo) catheter ablations and had a pacemaker implanted in the beginning stages of his heart failure.
He continues to have arrhythmia problems including atrial fibrillation and atrial flutter. He often feels sick and is constantly tired. He has had 3 cardioversions when his pacemaker has been unable to pace him back into sinus rhythm.
Now his electrophysiologist is telling him that an AV node ablation is literally his only option. Please tell me this isn’t true! He is ONLY 28 YEARS OLD!
What other options can we consider? We feel so helpless….
Jill,
Wow! I’m so sorry he’s been through all this by the age of 28. That’s amazing.
Surgery is still an option – I’m not sure why no one has mentioned it. There’s minimally invasive surgery, called the mini maze procedure (what I had), and open-chest maze surgery for those also needing valve work or a bypass. You’ll find more info about them below:
I hope this helps.
Mellanie
Mellanie,
We met with his EP today and specifically asked about the mini maze procedure. I have been doing some research, and thought he might be a good candidate for the mini maze. We were told it wasn’t an option for him because although he is experiencing arrhythmias, they are organized rather than unorganized, and therefore the mini maze wouldn’t be effective.
Have you ever heard of this being the case?
Mellanie, I’ve had two catheter ablations, the first one lated about 1 1/2 yrs before a-fib returned, the second didn’t seem to have an affect. My cardiologist and the heart specialist both recommend the AV Ablation along with a BIV pacemaker this summer. They say my heart muscle is not recovering and only operating at about 30%. There was some improvement in the muscle strength after the first ablation. I had some severe problems coming out of the anesthetic on the second ablation in Feb this yr. and am extremely concerned about the problems ocurring again. I trust both my cardiologist and the specialist, but just have this nagging fear of going under anesthesia again. My specialist says that the procedure will only be done with local anesthesia, this helps but I still have worries. What are some alternatives to the AV ablation and pacemaker? Thanks Bob
I had AV ablation last July, my upper heart chamber now beats at 300 bpm and my lower chamber is regulated by the pacemaker at 79 bpm. I am wondering if the fact that my upper chamber is beating so fast will damage my heart. I have two artifical valves, and am 52 yrs old. I am having hard knocking of my heart and feeling the irregular beats more and more. Any thoughts would be appreciated.
Hi, My son died ( 21 ) when they were done with the AV Node Ablation sent him back to the Motel after they said he was doing ok this was around 8:00pm and around midnight he died. He also had a Pacemaker / Defibrillator put in around June of 2006 and died in Aug of 2006… Had alot of complication was in Atrial Fibrillation alot in the past 2 years while he was in school he graduated and then went to collage and had a job for awhile….Most of the story’s that is on here is what he went threw… When he was 7 they said he had a hole in his heart so we had it patched was ok until his junior year.. Just wish he was still with us he is pain free and with the angels above…..
I had a TIA approximately 7 years ago after living with A-Fib for several years. Was then treated with various medications that did not help at all and put on Coumadin.. Finally 5 years ago I had the Ablation including the AV node and a pacemaker which seemed to finally stop the A-Fib until recently.. My ECG showed an abnormality and am still waiting to find out what I should or could do about this. I understand that sometimes a second Ablation is required but my cardiologist said “he would not advise it”. He told me after persistent inquiry on my part that the Abllation was 70% successful and here I believed it was 100% successful all this time.The coumandin now makes me dizzy, loss of balance, excessive blood in my nose.I stopped it on my own for awhile and felt so very much better – dizziness & balance restored can go up and down stairs normally nowl. However, I did go back on it and now waiting to see the specialist who performed the Ablation. I t has been a total nightmare and I am from a family (both sides) who never had heart trouble at all.
I am a 70 year young patient. Had A-Fib and was treated with meds and combination of meds for several years before I had the Ablation & pacemaker -I just have one lead from pacemaker inserted in my heart – – I am looking for some honest answers here. As well, I understand that after the Ablation for approx. 3 months, you stay on Coumadin and once the healing is comploete – you are taken off Coumadin…………..but not me — If a stroke doesn’t kill me the Coumadin will.l Thank you for listening and hope you are doing better that I am.
I am a 50 year old F..I have suffered for about 8 years with afib …I was on medication, but still had epsiodes of afib..it had gotten worse over the last year it became chronic…my EP doctor recomended an AV node ablation with a pacemaker ,,I was scared, but I figured it had to be better than how I was feeling at the time..I had the pacemaker put in sept 28 and the Av node ablated oct 13th….I havent had any trouble and have been feeling so much better….alot more energy …I feel like I did 10 years ago…so far I am glad I had it done and I hope I keep feeling this good for a few more years..as far as coumadin I never have experienced any dizziness or any kind of side effects from it..I have been taking it for 8 years…
My mother had an AV Node ablation 7 years ago along with the placement of and ICD device. She had been doing wonderful until this summer. Yesterday she had another AV Node Ablation because some nerves grew back. She seems to be doing better and is pacing with the ICD today. So, we are pleased.
My wife will be 70 next May, and suffers from persistant Afib. She has had three strokes, probadly due to the Afib, 1 minor and 2 major, but completely recovered from all three. Due to the strokes she will be on coumandin forever, so that isn’t an issue. Her Afib seems to be getting progressively worse and zaps her energy level to the point she spends most of her time on the couch watching TV. She has tried all the available med’s but has had a bad reaction to all of the Beta Blockers and Calcium blockers and is unable to take medication, so that option is out. Next they tried Cardioversion to try and shock the heart back into normal rhythem which didn’t work. Then they tried Radio Frequency Catherter Ablation which didn’t work due to the amount of scar tissue formed caused by Afib. Now were told if nothing is done the afib will get worse and the scar tissue will also get worse, and her energy level will deteriorate to the point of being practically bed ridden, which she doesn’t want being a normally active person. We are now being told her only option is the AV Node Ablation with a PM, which we were close to going ahead with until reading Mrs Hill’s advice about the AV Node Ablation. Seems like were in a no win situation!
So what should we do now: do nothing and see what happens, hope for the best, maybe a new scientific procedure might come out, or take a chance with the ablation and a PM also hopeing this will give her back a much better quality of life.
John,
AV node ablation is usually the treatment of last resort, and your wife is probably much too young to resort to it. I see no mention of surgery, so has no one mentioned that as an option for her? Where are you located? Please feel free to reply privately via our Contact Us page (at http://www.stopafib.org/contact.cfm) or post a query to our discussion forum (at http://forum.stopafib.org). With more info about her history and where you’re located, I’ll try to help more.
Mellanie
which place is the best I can do such operation ? I am from Egypt but indicated for it , and I prefer I go abroad for it !
thanks in advance
Kareem,
Before considering an AV node ablation, please learn more about other options, such as those below:
1) Catheter ablation: http://stopafib.org/catheter.cfm
2) Surgery – either of the following:
a) minimally-invasive procedure (closed chest): Mini Maze Surgery: http://stopafib.org/mini-maze.cfm
b) maze procedure (open chest): Maze Surgery: http://stopafib.org/surgical-ablation.cfm
Hope this helps.
Mellanie
I have had three cardio ablations and 15 cardiio versions plus have tried every medicine on the market to contol the afib/flutter. I am presently on amiderone (sp) which can have very serious side effects. During one of my cardio ablations my heart stopped so I was given a pacemker which I have had for over a year. The medicine is not working so we did a cardio version which did not put me back in rhythm. Monday I am scheduled to have the AV node ablation. I am 72 years old and am constantly out of breath and tired.
Bill,
I’ve been on the road and am late getting here to reply. I see that you are scheduled for an av node ablation in just a few hours. Based on your history, and the fact that you have a pacemaker already, I do hope this solution will give you the relief you need from your afib. Please let us know how it goes.
With AV node ablation, the afib doesn’t go away, but some people don’t feel it afterwards. I notice that you didn’t mention surgery, so it may be that no one has mentioned it. It might be an option if the afib still bothers you afterwards. Good luck.
Mellanie
Hi,
I was first diagnosed with afib in 2001 at age 52. I was told to take coumadin, but there was nothing else that could be done. In 2005, I was diagnosed with CHF and started taking a lot of meds. I was very tired and weak and this just got worse with the meds. In 2006, I found a new cardiac surgeon who did a mini maze procedure. Took about 6 months to recover, but I was then feeling good and was in sinus rhythm. I went back to work and led a very active life for about a year. Then I was back to the hospital with CHF again, lots of meds and back to a very inactive life–sleeping a good deal of the time. Struggling to take care of myself. In 2008 I had an AV node ablation and a defibrilator/pacemaker implant. I felt good about two months–I got my life back briefly. Then they discovered that I had constant afib affecting the upper part of my heart (probably not the correct medical description). At this point, my heart was in very bad shape. I went into the hospital for three days to start taking Tikosyn–250mg twice a day. This took care of the afib but did nothing for my energy level. Next week I go back to the hospital to increase the Tikosyn to 500 mg. They keep telling me that my fatigue is not related to my heart condition, but from what I have read here it seems most everyone else has this problem as well. Anyone else taking Tikosyn? Or have any ideas on what might help my situation? I am now 61 and spend my days sleeping and do a little reading. I keep hoping to get my life back.
Jade,
I’m so sorry about all that you’re struggling with. Yes, unfortunately the AV node ablation doesn’t stop the afib, and thus can lead to congestive heart failure by wearing out the heart. I find it surprising that they say your fatigue is not related to your heart condition – how could it not be? Constant afib fatigues us, and congestive heart failure does as well as the heart just can’t pump as strongly to get oxygen throughout the body. And why would they double the Tikosyn if it’s really taking care of the afib at the lower dose? I find this all very confusing.
Are you working with an electrophysiologist (cardiologist that specializes in heart rhythms)? It may be afib, or it may be other rhythms, and perhaps a catheter ablation could help. And have you followed up again with the surgeon that did the mini maze to figure out what could be going on and what could help with it? Sometimes folks get atrial flutter after a procedure and catheter ablation can easily wipe that out for most people as long as it doesn’t go on excessively long. Good luck.
Mellanie
My husband has had an AFib heart for 9 years and over the past 6 years has become much worse. We tried the ablation procedure twice went into rhythm for 1 yr then out again. Because of the AFib 9 yrs ago at the age of 55 he was placed on medications..after 9 months it was noticed his memory was getting bad..
His memory and confusion is much worse now and I am sure it is because of the medication and all the medication for Afib say can cause… memory, confusion, fatigue etc etc… well my husband for one experienced all the side effects. He had been so tired he has been saying he did not think he would be here much longer. Then on Saturday he actually passed out and taken to the hospital. He had an AV Ablation… already had a pacemaker so I am hoping this helps him. He used to sweat so much… in moring t-shirt wet and feet and hands cold… now no more sweating and hands and feet are fine. You are correct he still is on the blood thinner although I am in hopes he will feel much better…. he could not have kept going the way he was going. Constant AFib for over a year… has pacemaker that keeps record of the beat.
Sherry,
I’m glad it worked for your husband. especially since the catheter ablations didn’t hold him. I do think he is too young to be completely pacemaker-dependent for the rest of his life because of afib. [Presuming you’re in the US, there are no pacemakers currently approved to control afib, so it doesn’t help the afib–it just keeps the afib signal from going to the ventricles, but still leaves him in afib, though he just may not feel it.] Surgery is an option before going to AV node ablation and it bothers me when doctors skip the surgical option and go straight to the AV node ablation for patients as young as your husband. I’m glad that he is still on the blood thinner.
Mellanie
i am in Afib and have been for years have had a pacemaker for 16 . Due to being over tired , out of breath they are recommending atrioVentricular Ablation. all the medicines don’t work and i also take coumadin.
I am 65 but usually very energetic….
I am afraid about this and wonder if someone can give me info on what to expect. healing time, if it doesnt work then what….
thanks
Susan,
Even with a pacemaker in place you can have surgery, which can help eliminate the breathlessness from afib. If you no longer have afib after surgery, then Coumadin is usually not necessary. Of course there is also a new medication that is an alternative to Coumadin.
Mellanie
in 1996 I was almost disabled with afib with total ventricular involvement. That means my heart beat out of sinus rhythm for up to 10 hours each day. I had AV node ablation and pacemaker and two weeks later I was running around Disneyland with my daughter. It is now December 2010 on my second pacemaker and doing fine. If medication takes care of your problem cool. Dr’s are hesitant to make someone pacemaker dependent but If I kicked the bucket tomorrow, ( I am 62) I would be extremely grateful for the ablation and pacemaker.
Dave,
I’m glad the av node ablation worked for you.
Mellanie
I am 35 years old was diagnosed with IST 2 years ago.. I went to 8 diff cardiologists to diagnose this finally found a wonderful Dr. at Emory University in Atlanta GA. I had a sinus node ablation 2 years ago it was only a 40% chance of success… I am now experiencing jumping sensations in my heart my hr is going above 160 at times and doing nothing exerting… I am considering having a total sinus node ablation now as I am out of options.. This is debillitating to me.. I cant walk or exercise for my hr getting too high…
I take toprol now on 100 mg 50 mg in am and 50 in pm…My cardiologist says I will grow out of this but I am 35 wouldnt i have grown out of it by now…. To all of you who have pacemakers is this something I could consider to live the rest of my life so I can at least walk my dogs around the neighborhood without being out of breath on the first block…I cant even get on a treadmill for 5 minutes as this is too exerting for me…
Brandy,
You might want to check with a cardiac surgeon who does afib surgeries about whether surgery would help and with an electrophysiologist (a cardiologist who specializes in heart rhythms) to see if a catheter ablation would help. You’re much too young to resort to “just living with it”.
Mellanie
I’m now 68 years old. I developed AF first in 1990 but had a cardioversion which restored sinus rhythm for exactly two years, but had a serious accident on my mountain bike after which the AF recurred. I was treated with digoxin and took warfarin as a stroke prophylactic. After about a year of fatigue and general listlessness, I adapted to the condition and resumed my normal active life, going to the gym, playing tennis, hiking, mountain biking, although I was still limited having lost 25-30% of my cardiac output. This lasted until last year, when I started to feel very tired again, my memory deteriorated and I slept a lot. After tests, an a/v node ablation and pacemaker implant was recommended. I had these done last July. The results were good and I felt better than I had in years – like being reborn. I’ve recommenced my gym and hiking and my endurance tests at my hospital show a 5/5 fitness rating and VO2 rating of 70 – excellent for my age. Longmay it last!
Alex,
I’m glad the AV node ablation helped you. I presume you are still on warfarin.
Mellanie
I am a 60 year old female, and I am scheduled to have the av node ablation on Jan. 11th. I had mitral valve repair in 2004 with the maze procedure and post surgrey heart attack due to a suture in aorta. I was implanted with ICD 3 days later because of bad rythums. Since that time I have tried Sotolol, Tykosin, and now Multaq and have had three cath ablations, and cardioversions. This is the last resort for me, I am scared though that I won’t be free of the symptoms of Afib.
I believe I have a great EP doctor, and just pray for the best. I want to be active again.
Please check out Dr John Sirak at the Ohio State University Ross Heart Hospital. He has specialized in Afib, and has pioneered a new surgical procedure called The Five-Box Thoracoscopic Maze Procedure. The website is: http://www.ohioafib.com/maze-surgery/
My Mom just had it done Monday, four days ago, is 82 years old, and did great! For the first time her heart is beating in perfect sinus rhythm! The surgery is minimal invasive, the heart remains beating at all times, and CURES the afib!!! We live in Shreveport, LA, but travelled to Columbus OH for her to have the procedure. The only treatment offered her in Shreveport was the a-v node ablation. The a-v node ablation is the labotomy of heart surgeries.
When can afib patients begin to take the new anticoagutant, so we don’t have to get a blood test every 2-4 weeks, for the rest of our lives. OH! is this new drug for real,NO MORE INR TESTS!!!!!!!!!?????????
Jerry,
The new drug, Pradaxa (dabigatran), is available now. It’s expensive, so ask your doctor for the voucher from the manufacturer that helps cover your co-pay. It works with most insurance, except for Medicare.
Mellanie
Four years ago I had my H/A, I was in coma for eight days. When I made it home I felt like crap, I had trouble walking from 1 side of the house to the other. A year later I was rushed to the ER when I past out. Thats when we found out I was in A-fib,to make matters worst my heart was stopping for up to three seconds. I was fitted with a single lead PM. I spent the next two years waiting to die gasping for air. A week ago I had the AV nodal ablation and I feel like a new man. I have been on 4 liters of O2 the whole time and at best I shuffled around behind my wife whenever we went anywhere now she has to keep up to me. I’d rather have five years like this compared to twenty like I was,then I was just waiting to die.
David,
I’m glad that the AV node ablation worked for you and that you’re enjoying life again.
Mellanie
My husband is 82 and has had a history of heart trouble since 1990. Had two heart by-passed surgeries – the first one in 1993 and second in 2003 and a stoke in 1997 which he recovered from it completely. He never did recover completely from the second by-passed surgery. Although he was able to do light exercise such as walking up to 2 miles a day, but the energy level never completely return. He was hospitalized 2 to 3 times each year for chest pain and had received 5 stints. Finally, in February 2008, we were told that the stints in the descending artery had completed failed and was put on several different medications which often gave him nausea and had to stopped them. In Nov 2009, while shopping at Lowes, he passed out and fell, hitting his head on the concrete flood, was rushed to the hospital. Drs. gave him a one-lead PM, put on Pacerone for Afib, but couldn’t handle the extreme nausea and had to stop it, then he was in the hospital four more times between Nov and Dec 2009 with kidney issues and sharp pain in his GI track, chest and eyes, then he had CHF for the first time. He was treated for his kidney problems and CHF, Lasix was added for CHF. He got better and did return to walking until the weather got cold here in Dayton Ohio, then all of the sudden in December 2010, his pains returned and was hospital three times in one month, he had a cardioversion and took Multaq to control Afib while in the hospital, but he couldn’t take the severe pains and nausea and had to stop Multag. Finally, after five days, he was released with an increased dose of Lasix as he retained so much fluid in his ankles. A week later he oxigen level dropped to 86 and was rushed back to the emergency. By this time, his lungs were filled with fluid (severe CHF) and had to be treated with IV Lasix. He is in extended Afib and his heart is so weak that it is not pumping very well. On Jan 6, 2011, he got an ICD and Imdur and hydralazin were added to his already long list of medications. The recovery has been slow but he is finally able to go on short grocery shopping trips with me. Today at his follow-up appointment with the EP doctor, we were told that the ICD is working fine but his heart rate is still high. The AV node is working at 68% with the help of the ICD so he is scheduled to have the AV node ablation on 31 Jan to improve this condition. . After reading many negatives on the AV node ablation, I’m wondering if it is better off to leave things alone.
Lily
Lily,
Typically the av node ablation is reserved for those who cannot have other procedures, which is usually starting at about age 80. Once you pass that, it’s more common to have it to improve the condition. I’m not a medical person, and thus can’t give medical advice, but considering all he has been through, it may be that he will be more comfortable after an av node ablation so that the pacemaker takes over and gives his heart a break. I wish you both good luck and hope that he feels better and has more energy afterwards.
Mellanie
in 1998 I had open heart surgery for mitral valve repair. Ever since I have had AFib that wont go away. I have had numerous cardioversions and went trught a long list of all possible drugs such as Amiodarone, Sotalol, disopyramide, Tikosyn, flecainide, diltiazem. I am also alleric to betablockers so my drug choices were somewhat limited. I went trough first catheter ablation in 2005. It failed. I had second ablation, it also failed. 4 years since my last ablation taking fecainide and diltiazem not helping much. Had TIA this past september and was put on Asperin 325 mg. I finally saw a different EP doctor (not the ones who did the two failed ablations) HE said that he would be willing to do a third ablation but success rate would only be 50% due to scarring from the two previous ablations and the procedure would take at least 6 hours and he would have put me under general anesthesia. I am scared of being under for such a long time since I have read articles about memory loss and i cannot afford to have it at my age at 67. Anyone know anything about this.??? He also gave me a choice to have AV node ablated and put in a permanent pacemaker. The kind that my life would be dependent on and it could never to turned off or I die I am really torn about this. I hated that ablation procedure plus all the tests (including TEE) and then have it fail since the chances are only 50%. Then I would have to have the pacemaker inserted anyhow. I t is a big dilemma for me. My new EP doctor was shocked that my cardiologist or PCP had not put me on coumadin. So now I am on coumadin while I ponder what I am going to do……………
Marie,
I’m so glad you’re on Coumadin while you make the decision. It seems that you’re too young for an AV node ablation though. Have you asked if surgery is an option (not catheter ablation)?
Mellanie
This blog may be a bit out of date, or maybe I don’t understand the terms. I just returned from having AV node ablation in San Francisco, supervised by Dr. Melvin Scheinman, who invented the procedure. They ablated just the slow path through the AV node, leaving the fast path, so I am not pacemaker dependent. First, they induced the arryhthmia in the lab. Then they did the ablation, and then they tried, unsuccessfully, to induce it again. Total success. I am now on a weaker anti-arrhythmia med instead of Sotolol, becuase I also have PVCs, but no coumadin or other blood thinners. Life is good. Mellanie says that she is not a medical person. It seems strange, then, that she purports to be an expert in this area. Personaly, I’ll trust the advice of an electophysiologist.
Sam,
Actually, I think it’s a case of confusion of terms as you and I are talking about different things. I received your comments while on a flight back from the Western AF Symposium, at which Dr. Scheinman and I were both speakers. Also on the flight was a highly-regarded electrophysiologist, so I asked him.
He confirmed that ablating the fast path is usually done for an AVNRT (av node re-entrant tachycardia) ablation, and ablating the slow path is sometimes done, but not as an AV node ablation for afib. They are very different, even though the names are similar. It’s easy to see how they could be confused.
I don’t give advice on StopAfib.org. On the blog, I don’t give advice either, but do give opinions. However, those opinions are usually informed by what I learn at medical conferences and from asking the world’s top experts what they think or whether I’m on the right track. The EP I asked about your ablation confirmed that my opinion, as expressed in this blog post, is still on target for afib. He confirmed that AV node ablation should only be used on those who are too frail or too elderly for other procedures, which is what I believe as well.
As long as you’re working with an electrophysiologist who has your best interests at heart, then you should trust him or her. But not everyone is in that fortunate situation, and that’s why we’re trying to inform about the risks.
Mellanie
Brandy,
I don’t know what your current status is with your AFIB; however, I just had a very successful procedure combining the Radio Frequency and Cryoablation surgeries. I’ll be more than happy to go over it with you in detail (pre-op, post op, recovery, meds etc.). Everyone is different and while there are no guarantees, I’m very pleased with the results thus far.
At your age, I’m shocked that they would perform a sinus node ablation when there are several other options. I would certainly inquire as to why this was necessary when other procedures could have produced far better results.
My mom is 72 years young and has been dealing with flutter and afib four years now. Two years ago she recievd a pace maker to be able to increase her arthmia medication. Things have went well until now, her doctor has given her three options. The maze procedure [mini maze I asume, he said they would go in from the sides of thechest, the pulmonary vien isolation and the av node ablation. I ‘m thinking the maze may be better due to the first time success rate of the ablation being 50 % as I was told by the doctor. I would like to know your thoughts. Thanks in advance.
i have had afib, irregular heart beat, slow beat, really fast beat… i have had every medicaltion to man for it. still take carvederal and digoxin and coumadin…. this is my 2nd pacemaker and they want to do the a v nodal ablation … i have to do something but am reluctant…. i have been told 2 times not to do this , i am at my wits end trying to make a decision. thinking about going to the mayo clinic for a second opinion. i have had the best doctors.. but still have a gut feeling about this. i am 65 now.
anyone have any good ideas ????i need help.
thanks
susan
i have had three catheter ablation and the third seems to be doing ok but i take alot of medication to keep my heart from beating to fast. one is metoprolol 200mgs aday and verapamil 240 mgs once aday plus my high blood pressure medication diovan 160mgs hct once aday,the medication seems to work but at night my heart speeds up to around 92 to 95 beats per minute and it stays that way till around five in the morning then i take the metoprolol and verapamil along with the diovan in the morning but i do not like that i have to wait alease three hours before i can go do anything, the wait is for the medication to take affect before i can go and ride my bike are do any kind of excise are if i do not wait for the meds to take affect i am at 91 to 97 beats per minute all day long, plus i take the new blood anticoagucant medication pradaxa twice aday. i am not on a pacemaker and i am glad of that but i do not know why my pluse goes up at night and this medication is surpose to be long acting. i think i will go back to the doctor to see why this is happening.
Mellanie, it seems to me that an open-chest maze procedure would be a lot riskier than an a-v node ablation (mentioned as an alternative in a post above). I’m told any a-fib ablation (other than a-v node) would be too risky for me. I have had two heart surgeries and I have a mechanical mitral valve. I now have symtpoms of heart failure due to persistant a-fib following the mitral valve surgery 8 years ago. My ep is recommending the a-v node ablation, and I’m inclined to go ahead as it would mean: my heart failure symptoms would lessen or be eliminated and I could stop taking a lot of meds (other than coumadin, which I have to take anyway due to the mechanical valve). What’s not to like? I am 57. Thanks — this is an interesting blog.
Emma,
Your situation is one of the really complex ones. Since you are so young, it might be worth talking with a maze surgeon before opting for the AV node ablation. I know of a number of folks whose heart failure went away completely after having a maze procedure to stop their afib. I guess a lot has to do with how symptomatic you are with afib. Many people still feel their afib after an AV node ablation.
You’re welcome to join us in the our forum if you’d like to discuss this further: http://forum.stopafib.org
(Instructions for registering & getting started are here: http://forum.stopafib.org/index.php?showforum=25)
Mellanie
I have a question about something I read above…. that continuing afib in the atrium following an a-v node ablation could lead to heart failure. This perplexes me. If sufficient blood were pumped by the ventricle following a-v node ablation, wouldn’t that be all that mattered? Thanks for any clarification! I do not think there is really any choice for me, but I want to be sure before going ahead.
I was in Afib for about 12 years.On Sept. 12, 2010 I had a pace maker implant & 2 months later an AV Node Ablation. Why am I so tired all the time?
Howdy,
I am currently trying to get myself mentally and pshchologically prepared for an AV node ablation and upgrade to a CRT pacemaker on July 11, 2011. I had a triple bypass 18 years ago, two heart attacks 10 years ago, and – for the past two to three years have sufferred from the effects of CHF, Afib, and atrial flutter, all of which seem to have worsened within the last 90 days The doctors have been guiding toward the ablation for about a year, so I’ve finally consented to go through with it next month. I am a 74 year old great grandfather, and have previously enjoyed playing stringed musical instruments – guitar, fiddle, & mandolin. However, lately, I’m just not able to due to weakness and fatigue cause by the Afib. Are there any available sources of additional information? I don’t seem to be able to find much positive input on the internet.
im 44 and and had my 1st pacemaker at age 17 and was on alot of meds Verapermil/Digoxin/Sotolol and they made me feel very weak. im now on my 5th pacemaker and had an AV ablation back in 2006, it worked no more AFIB or meds and that was great, but last year i started to get AFIB back again but in no way as bad as it was before the opperation. i went to my GP and she informed me that some of her patients have had up to 6 AV ablation procedures! i was offered another ablation but i declined because after having the procedure my pacemaker batterys only lasted 5 years when the pacemaker i had before lasted 10 years…big difference. my other worrie is pacemakers can and do have faults thats why im on my 5th now, if this pacemaker has a fault i will be very worried now that ive had the AV ablation. I think for me if i could go back in time i would have declined the 1st offer of the ablation because my symptoms were not as bad as some paitents.
I have had a-fib since I was 26. The first time it occured I was almost 4 months pregnant. I had other episodes over the years but I just dealt with it as it occured as one cardiologist said to do in a matter of fact way, like its no big deal. When I hit my late forties I began to have more episodes of a-fib and always symptomatic. I had to have a number of cardioversions done and went through most of the drugs to treat it, most of which gave me hives and did little for the a-fib. The last drug was Tikosyn and a week later I was in a-fib once again,another drug was added and I was still having episodes so when my doctor said we could add a third medication thats when I said enough and he recommended a catheter ablation which he and other cardiologists also suggested. I went for it and it went very bad. One “hot spot” was ablated and it stopped my heart but it restarted on its own then he hit another “hot spot” right next to it and it stopped my heart but that time it did not restart so an external pacemaker was placed due to complete heart block. I did not get any heart function back in the ventricles of my heart, he had hoped it would return within a few days possibly caused by swelling. Needless to say i now have a permanent pacemaker, its been two years now and yes I still have a-fib and some episodes feel worse than before. I am always tired and I get short of breath if I walk too fast but my doctor insists it is due to being out of shape. I was out of shape prior to this and did not suffer from shotness of breath. I more or less have ended up with an AV node ablation since the function was affected by hitting that one hot spot. I have not felt good since and would recommend that anyone who is told that they should have this done get a second, third opinion before commiting to such a thing. This has affected me not only emotionally but it has affected my job. I work in a hospital, with stroke patients, if they are having a stroke I have to find someone to go with them to MRI in my place since I can no longer be near an MRI, just makes an emergency situation more difficult. Being pacemaker dependant was not anything I ever thought would come out of this and if was told that this was goig to be the end result I surely would not have done it. Its final and I will never feel the same again.
Mellanie, I am a 72 year old male and have had AF since my twenties, medicines such as Tykosin(?), Amiodorone and Multak as well as an ablation have not helped, By now my ventricle has enlarged to 6+ cm and my ejection fraction is 28%, as a result, a two lead pacemaker was installed june 2010. I feel very weak and with shortened breath. Among the pertinent medicines that I take are Toprol, Cozaar and cumadin. I have been in constat AF for years. Yesterday at my cardiologist, he suggestes a total av ablation and replacement of my pacemaker defibrilator to a 3 lead one, he will discuss this with my Electrophysiologist and contact me to arrange for the procedure. My concerns are the finality of the procedure and the total dependance on a pacemaker. Please give my your comments about this.
Thanks in advance for a prompt response,
Patrick Tocornal
6800 Brookbank Rd
Summerfield NC 27358
336-643-8260
Patrick,
My apologies for not responding sooner. I’ve been on the road for the majority of the past 3 months and just didn’t get to all the blog posts while traveling.
You’ve had afib for a mighty long time, so I’m not sure that other procedures would be successful. But it couldn’t hurt to have a consultation with a surgeon to find out your chances of success. I don’t think that a mini maze would be effective with such long term afib, but it’s possible that an open-chest maze might be successful. I sure think if I were in your shoes I’d talk with a surgeon before having AV node ablation done. My concerns are like yours, the finality of the procedure and being pacemaker-dependent.
Mellanie
I had an ablasion back in 1992, only thing I am not keen on is being dependant on a Pacemaker, there are worse things in life though.
I had Super ventricular disease and 2 small children to cope with prior to my pacemaker being implanted. I was constantly ill, heart beat dangerously fast to the point where they would not let me even clean my teeth one morning in hospital. I hated being ill at such a young age.
I took Amiodarone cordorone for 5 years.
Since I had catheterisation and a pacemaker fitted, well my 6th in 4 weeks time I have never looked back, no drugs to take for my heart exept an aspirin.
Only thing that kicks of my fast heart rythm now is Anaesthetic, and that calms down after a while.
I have never seen it as an old fashioned treatment, I saw it as a cure and so far I am fit healthy and have worked almost full time as a senior in a residential home.
I am now 57 years old and love life.
There probably are newer cures and drugs around now but I am so grateful to the Cardiologists that have helped me to stay alive.
I look forward to my retirement.
I am a sixty year male who has had PVC’s for years now,
I can tell you honestly none of my Doctors in Bellingham, WA or Grangeville, ID nor at St. Lukes Cardiology in Boise, ID, have had the slightest clue about my PVC’s nor what the level of PVC’s I have can do to a person.
I have just recently been “Clocked” shall we say of having 32,000 PVC’s in a 24 hour period via a 12 lead Holiter and have had a Echocardiagram.
Great to finally get confirmation but I was told by the clinic I am in that the only way to go is having a Ablation done…the one doctor…really a resident on a fellowship I found out said it would be 100% cure and the PVC’s would not reaccur and that I could go home again right after the procedure…I am having to drive home…it is a 1,625 mile drive back home…does this sound right to you?
I have emailed the “lead doctor” four simple questions, three weeks ago. No reply…I feel like I am not getting the full story and this clinic is very large with their own hospital…I feel like I am a number not a person and I am beginning to not trust what I have been told and the majority of nurses seem very young mostly in 20’s and not highly knowlegdable or not forth coming with info…in fact info seems to be kept tight lipped around here
What do you think about the ablation for PVC’s is the “way too go”
i just had a/v ablation and let me tell you i feel much better.i have afib, along with tachabradycardia and atrial flutter. the medication they tried was brutal.headaches, constipation, vision problems, lathargic,it was awfull. i was scared of depending on a pacemaker, but this is definitly the less of two evils.im back to my old self, and feeling great. working out everyday. best move i ever made. its a big move, and it may not be for everyone, but it really worked for me.
Mike how are you now do you still feel the atrium fluttering beating. I have too make decisions on having a av node ablation what is you root cause of your symptoms I have HCM i have tiried so many beta blockers digoxin etc I am now seemingly permanently in flutter we tried a cardioversion last week but the sinus rythmn only lasted for 10 years and the AF is back !!
Hey Mike I have afib and have tried all the meds and ablations and have had a maze procedure done the drs recommend AV ablations but say I’m too young I’m 60,I read the longer you stay out of rhythm the harder it is to get back,they also said the AV ablation and pacemaker won’t get rid of afib just help you live longer,I was wondering as to how you are doing as I have to make some kind of decision soon,thanks
@Bill McNeil Please email me privately (using the contact form at http://www.stopafib.org/contact.cfm). You’re much to young for AV node ablation, so I’d like to find out more details and see if I can help.
March 1975 I had first open heart triple bypass. 1982 the second triple bypass and third triple CABG in 1992. Then started the graft and natural coronary blockage angioplasties. Then the stents, then the membrane blocked stents followed by treated stents. That is known in cardiology as work for the plumbers (opening blockage in the coronarys). Six years ago I started experiencing electrical problems, A Fib, A flutter, V fib. Then a pacemaker, that didn’t do the job followed by ICD. Then I started sliding down hill, loosing weight, weak and all chalked up to mitral valve regurgitation and not a candidate for valve repair, according to a cardiologist. (The program after ICD implant the electropsychiologist turns patient over to cardiologist). I told the cardiologist my gut feeling was something’s wrong in the timing of the heart. An echocardiogram showed need for adjustment in what I think was 200 milliseconds to 270 milliseconds which immediately put the ventricles back in sync. (VERY IMPORTANT THAT THE ATRIA AND VENTRICLES FUNCTION IN SYNCHRONY TO KEEP MAXIMUM BLOOD FLOW THROUGH THE HEART LUNGS AND OUT OF THE AORTA. Next day I was walking 5 flights of stairs in hospital and day before I was out of breath going to my car. Following day I changed cardiologist. The computer for my research, and the electrophysiologist that did 7 electrical procedures, 4 ablations, ICD implant, re-implant of atria lead put in wrong by a cardiologist has allowed me to enjoy my 83rd birthday. Also along the 34 procedures in 36 years, was wrong meds that were doing more harm than good. If you can read this then you have a computer and access to a world of knowledge about all I’ve mentioned above. Do the research on your meds, do the research about fluid retention (edema that shows in ankles) caused by weak heart dumping fluid in lungs causing breathing problems, chest pain caused by blockage and in my last case where ventricles were out of sync (change on ICD settings over four years)(but not detected by a cardiologist), but causing (the left ventricle not filling and sending sufficient blood out of the aorta). When I was resynchronized the angia (chest pain) disappeared over night. Try to find cardiologist who knows and get rid of the others who are not qualified. The world is full of good cardiologist and unfortunately those who have not kept up with the latest technology.
In the Fall of 1994 I was 29 years old and diagnosed with atrial flutter which progressed to atrial tachycardia. It was controlled nicely with the betablocker Atenolol. By the Summer of 1995 I was have episodes of atrial fibrillation, my EP doctor at St.Lukes Hospital in Milwaukee recommended a cardiac ablation. The procedure took 3-4 hours as there were multiple sites which required ablation. Two-three months later I was experiencing Afib again, this time they recommended a drug called Amiodarone. The drug worked really well, unfortunately there are numerous side effects, too many to list. After 4 years they did another ablation with no significant improvements. I was hoping to get off the Amiodarone due to it’s many harmful side effects. By now I was taking Synthroid for my Amiodarone induced hyperthyroid, also was very photosensitive, burned easily in the sun if not wearing 60 sunscreen.
Around the year 2000, my heart rate was not getting much above 45-50 beats per minutes even during exercise leaving me very tired. It was at that time I had a pacemaker implanted and my quality of life dramatically improved over the next few weeks. It’s been 11 years now, I’m on my second pacemaker and still doing well. I go for pacemaker follow-ups every 6 months and see my EP doctor once a year. Now I’ve been talking with my EP doctor regarding a change, either changing from Amiodarone to another drug to prevent AV node conduction or have a AV node ablation. I’ve been lucky with Amiodarone, but I don’t want to push my luck as research suggest long term use of Amiodarone can be fatal as related to serious complications like pulmonary toxicity, lever dysfunction, etc. Only time will tell.
Desmond,
Wow, you’re much too young to be on amiodarone for any period of time and really too young to consider AV node ablation, too. It’s been 10 years since your last ablation and they have improved significantly. In addition, there is minimally-invasive surgery that wasn’t available then either. I would think that the AV node ablation would be the procedure of last resort for you – it’s usually recommended only for those for whom ablation or surgery cannot be done safely. But either catheter ablation or surgery should be an option for you, unless there are some things in your medical history that we don’t know about. I think you may want to talk with a different EP for a second opinion. Good luck. Contact me privately (http://www.stopafib.org/contact.cfm) if I can help further.
Mellanie
i live in pa and had my second cather ablation done on sep 28 and it was sucessful; my medication has been reduced and will gey off the amiodorone on dec 13 and will get off pradaxa in feb; great young doctor who did the procedure at jefferson hospital in pittsburgh the key is exercise ; walking and light weights and keeping blood pressure under control; yours truly; norm
Norman,
Congrats on your success.
Mellanie
When I was between the ages of 14-16 I was diagnosed with a heart murmur, SVT (heart rate was up to 340 beats per min.), and Mobitz 1 and had an ablation of my av node. Within a few weeks the palpatations started again minus the heart rate increases. I am now 29….still have the palpatations that sometimes make me so tired I can barely move. No EP has been able to help, beta blockers haven’t helped either. There is a family history of SVT and palpatations. My mother, her two sisters, grandmother, great grandmother, and 3 cousins. All of whom have been successfully treated with beta blockers with the exception of me and one cousin. We have both had the ablation. Mine 15 years ago and hers just a few months ago. Am I doomed with this for the rest of my life or are there alternatives?
Good to hear the stories above. I am 55 years old. I had open heart surgery when I was 19 to correct an ASD. I got my first pacemaker at 22. At that time I had had an incident of tachycardia. I was given quinidine which we found I was allergic to. Went into cardiac arrest and my heart rate stayed around 30 after that. Hence the pacemaker. I am now on my 5th or 6th pacer – can’t remember which. I have had occasional problems with a-fib and flutter. In 2005, they got really bad, lasting for months at a time. I had my first ablation then. That lasted 3 years. Since 2008, I have had 5 more ablations. I’ve been cardio-verted many times. I am very symptomatic. I can feel this the second it starts and it just goes on and on.
My cardiologist who I have been seeing for over 30 years has been wanting me to get the AV node ablation done. Two different EP docs have said they don’t agree. I am too young (I love them!) to have this done. I switched to Pradaxa last year after taking Coumadin for a little over 15 years. I will always be on blood thinners and always have a pacemaker. I seem to be allergic or have extremely adverse reactions to so many meds. The ones I can tolerate don’t help. So my hesitation in doing this is that it takes away any hope of future technology.
Thanks for all of the opinions folks have posted.
Terri,
I tend to agree with your two EPs that you are way too young for AV node ablation. It’s often a procedure of last resort, generally when folks are too frail for catheter ablation or surgery (often age 80+). With 6 ablations, obviously that is not working for you to solve the problem, so have you considered surgery (maze or mini maze)? You’ll find more about these procedures here:
1) Mini Maze Surgery: http://stopafib.org/mini-maze.cfm
2) Maze Surgery: http://stopafib.org/surgical-ablation.cfm
Mellanie
I have had afib for several years and have taken all the meds you could possibly take they did not work had 3 ablations they did’nt work the drs finally talked me into having a maze procedure done said it was a 90 -95 % cure all not true that was in 2009 still having afib found out later it is only a 50% cure not like they said,they want to go thru the ASD in my heart but told me there was some major concern about the patch,I don’t believe everything they tell me anymore you have to check it out for yourself,
@Bill McNeil Maze procedures are typically 90-95% effective, so I’m really curious about the 50% figure you quote. Was it an open chest maze, or are you talking about a minimally-invasive procedure, often called a mini maze (not exactly the same thing as a maze)? What energy source or tool was used on your maze procedure? Do you have any idea why this was less effective? The only reason it should have been a lower effectiveness would be if you had had afib for a long, long time and it was so set-in that they couldn’t reverse it.
New to Afib and sleep apnea but now I have both. I am 73 and am also taking atenolol/altace for BP and simvastatin for chlorestrol. I am also currently on warfarin and undergong a third sleep study on 1/19/12. The Cpap summary indicates that I may have central sleep apnea rather than OSA. I was scheduled for a conversion next week but the pulmonary doc is telling me that prior to that procedure the sleep apnea issue should be finalized and brought under control. If not, the conversion will not be successful. Taking this one step at a time. Any suggestions?
Joe,
Your doctor is right – the sleep apnea needs to be resolved in order for cardioversion to be successful.
Mellanie
I’m a 59 yr old woman who had been having heart arrythmias constantly for the past 5 years, with my first experience happening in my early 40’s. They were frequent, many times a day lasting for 15-20 minutes. They seemed to have increased after I had lymes disease. I was told that everyone experiences pvc’s, usually 100-1,000 per day. I was shooting 20,000 a day. Due to my family history, 4 brothers died before the age of 55 (only one of heart attack), mother died at 73 of heart attack, I was a good candidate for cardiac ablation. It was done on 9/30/11 at the Mayo Clinic. Typically they keep you under sedation but still awake as they found that once sleeping, patients quit throwing pvc’s. Not with my case so was able to be put under completely. Yeah! They found one node causing the problem but because it was too close to a main nerve/artery (the one that controls breathing), they burned 7 spots all around it. It has worked beautifully and I am so thankful! Due to the pvc’s I found I couldn’t get enough oxygen to my muscles to allow me to exercise without fatigue. As a result I put on weight, didn’t feel like socializing, quality of life lessened. In 2.5 months after the procedure, I’d lost 30 lbs, I exercise daily, feel great and no pvc’s to date. Also noticed that I no longer have hot flashes like I was having previously (many a day). So, from my standpoint – a huge success.
I have tachycardia since 2007. I was put on concor 10mg. This medication helped for awhile. I had several bouts of tachy again. I then went to a Provincial Hospital and was given Tilazem 180 CR. I was then referred for cathether ablation after another tachy. I failed to keep this appointment because of all the reports I read about the side effects of this procedure. I wen t to the hospital again after another tachy and another doctor stopped the Tilazem 180 CR and put me on diltiazm tablets 90mg twice a day. During every visit to the hospital after a bout of tachy, I was given amediorone. I am very uncertain and reluctant to go for cathether ablation. What do I do?
You can’t stay on amediorone very long too many side effects it will cause liver failure and effect your lungs and eyes. I’ve taken it and my doctor has stopped it I have afib I have had the ablations done and they don’t always work the first time you may have to go back several times before you get any relief,
I was born with TOF I’m 28 yr old within the past 3 years I’ve had about 6 abolations for Atech also I had an ICD implanted about 2 years ago.. My ICD has fired at least 40 times for a tech and a flutter.. anyway to make a long story short my last ablation was the 3rd of the year and now I’m having the same problems been on several different medications that has worked for a while then all of sudden wasn’t working so well.. my doctor said an AV node abolition was the next step.. I need to kno are there any other options?
I’m 37 and was born with transpositon of the great vessels which was corrected in 1975 and then a procedure called the mustard procedure was don at eh age age of 2. In the 3rd grade my heart wasn’t keeping up with my daily activity as I would come home from school and fall right asleep. I had my first pacemaker put in that year and the medication I was on at the time was digg and phenobarbotol(sorry about my spelling) That pacemaker lasted until 1990 and that year I went into atrial flutter and stayed at Kings Daughters Childrens hospital for 9mos that year. After trying numerous medications such as quendine and a few others, and multiple try at cardioversion to jump my heart back into sinus rythm, a Europen docotor along with my cardioligist at the time Dr. Ross performed a AV node ablation on me a the the age of 15. At that time I had a dual lead pacemaker put in to replace my old single lead pacer. All medications stopped and I have been fine for years having had at least 3-4 pacers since and being pacer dependent as my heart rate is only 30 plus beats a min without the pacer. During pacer checks when they cut the voltage back I tend to get slightly dizzy and almost faint, so the techs really have to keep a close eye and be very fast on their pacer checks.
Over the past year or so i have had a few chest pains, and tend to tire much faster that just a few years before, I actually don’t know how much longer i can keep up my job in metal fabrication. As i know my circulation is not the best and I have a had a series of verriocos veins pop up rapidly behind my legs and around my ankles and tend to hurt after standing 8-10 hrs a day.
I Am a 85 yr old woman. Had mitral valve surgery in 1994, so I have a ring in my heart. Three years ago I was diagnosed with A-fib. I was on Warfin and recently had a pacemaker installed. One week later another surgery because a wire had come loose. Now on Prodaxa. It seems to work well but went to Dr yesterday and he wants to do a av node ablation. He feels it should take care of a-fib. But what I read earlier it doesn’t always cure it. I am afraid of being totaly dependent on a pacemaker. Not sure what to do. After reading some of the comments it doesn’t seem to get rid of a-fib. How does one make a decision such as this. I am trying to read all I can about the procedure. I also did not know so many people have had pacemaker replacements. Any helpful info would be appreciated.
This is too late for you but maybe a new person will come along. Pacemaker batteries last about 7 or 8 years, it depends on how much it has to work and will need to be replaced. I knew that going in so when the time comes, it is well worth it to me. The pacemaker has greatly improved the quality of my life. If the time comes when I need an AV node ablation and it probably will, I will do it unhesitatingly. To me the only downside is having to take warfrin.
Heart problem with no available warning. I have ICD implant plus AV node ablation monitored and watched by electropsychologist frequently. Shortness of breath and much todo about meds such as Laskix, Digoxin, Enalapril, etc. I walked into ER and told them “I have advanced coronary stenosis, prove me wrong.” I was right 95 percent blockage in right coronary graft, and no doctor had seen this coming on. Why????? Bill
This is Fiddlebill again. I have found the answer as to why I was blocke 95 percent in right coronary graft. It was because the presentation shown on the ICD computer screen does not show abnormalities in the coronarys. The ICD computer shows only a corrected screen generated by the ICD computer, and my coronary was getting blocked and nothing detected the problem. The EKD or ECG for more of proper name has shown coronary problems in the ST wave for nearly a century. But when the ICD is inplanted, it blanks out that information for the rest of our lives. Contact me if you like and I will share my rear end chewing from the Patent Office, to the Food and Drug, to Medtronics for not giving patients on going wearning info to Cardiologist who have inplanted ICDs, to provide scans and oversight for coronary blockage. Thousands have most likely died because this has not been done.. I’ve had 36 heart related procedures in 37 years, and I didn’t know anything about Cardiologist being blinded to the facts. [email protected]
I’ve got a question I have had a heart surgery for a large hole in my heart in 1999,and a Maze procedure in 2009 to fix afib,none of these have worked and I have had 3 ablations and 3 cardio converts since then,I’m now in afib and I have taken all the medicines they have for this condition, I was told on Tuesday that I needed to have another ablation by going thru the patch to the left side of the heart to fix the false signals but the problem is that this is very dangerous because of the patch,they don’t know what this will do by going thru the patch if it will heal up or not I have also read that it takes more than once to correct this problem so do you think that I would be a canidate to have a AV pacemaker the drs said I might be able to live another 16 years if I have this
@Bill McNeil We have lots of knowledge of afib, but the patch for a hole in the septum is not something we have much knowledge about.
Are you working with an electrophysiologist? If not, please do so. If so, please get a second EP opinion.
Any idea why the maze didn’t work? Have you been in afib for a long time?
Mellanie
I’ve got one question will the AV node ablation stop the fast beating heart, Iwas told if the heart did’nt get any rest it would wear out sooner
@Bill McNeil The pacemaker will keep the heartbeat in a normal range. A beta blocker slows the heartbeat, and should do that as well.
Wrong. On beta block 125 mg bid was only taking 50 one daily until my heart racing. Been in and out hisp for a week. Rate with I’ve diltizm drip goes 70 to 190. I would rather be gone than feel like this the rest if my life. I can’t walk 5 feet without being out of breath and pain. Sv ablation In morning
Not always…meds didn’t stop mine..I was racing at 190 bpm….had the av node ablation yesterday….so glad I did!!!!
My good news that is a very strong position against …which I think is not necessarily helpful. I signed up to this site to hopefully get the feedback of people who had had AV ablation for some people it does become a last call in the choice making process.
I have discussed with both of my cardiologists in depth the pros and cons but they can’t tell you how it will feel do you?
I have had four ablations over the last six years I do suffer bad bouts of af each ablation bought me some time but no permanent end to it. I have just had 6 months solid horrid exhausting eventually I had a cardio version and I have had 6 weeks clear sinus now I want to feel like this forever unrealistic I know but some people who have had the av ablation talk of feeling that good afterwards.
I already have a pacemaker so part of the job is done when I first had it fitted I was very aware of iit now not at all, maybe I will get used to the atrium remaining in af and my ventricles going steady, my two brothers both had strokes as a result of our condition so running in af does worry me…. Please try to keep an open mind we do need the medics as educated people we like to understand our conditions but the answer is we don’t we can’t keep up with it all Aly
Had the av node ablation yesterday…already feel good!! Don’t let people scare you…for some people this is our only chance at a quality of life…god bless…and anyone who wants to can contact me at [email protected]
I’ve had a mini maze in 2007 which was not successful. But after finding out a couple of years later that I have celiac disease and going on a gluten-free diet, I was afib free for over a year, and after that only had short episodes every four to six months.Until a couple of months ago, that is. Then I developed atrial tachycardia that just wouldn’t quit.They went into the left atrium to try and ablate it but found that all my problems are coming from the right side. Much more complicated.
Ok, so now I’m on cardizem and digoxin, but I still keep going in and out of afib and atach all day long. I don’t feel good and have no energy whatsoever.
Saw the electrophysiologist yesterday and he said I had three options:
1. Keep going the way I am. (Not recommended and really not possible. I wouldn’t want to feel this way for the rest of my life.)
2. Have an AV node ablation and get a pacemaker. No more drugs other than warfarin for the rest of my life.
3. Try an ablation in the left atrium. He gave that a 50/50 chance of success. Also I will have to wait a couple of months for that because I developed a blood clot in my leg after the left atrium procedure, and it hasn’t dissolved yet.
I have no energy and feel my heart beating crazily almost all of the time in spite of the drugs. The EP admitted that the AV node ablation was the “last resort,” but thought that maybe I was at that point. I must say, I’m getting there.
I had the av node ablation last fall….for me it was the answer!! It gave me my life back…..my only regret….that I didnt do it sooner…and I just returned from a cruise!
Don’t let people scare you ….for some of us who have tried all…it can give life back!!!
Pam…age 58
Hi Pam,
Are you on blood thinners? Staying in afib long term builds fibrosis, or scar tissue, in the heart and that increases a woman’s already greater risk for stroke. The increased risk of stroke from av node ablation, especially in someone so young, bothers us a lot at StopAfib.org. We do hope you are on blood thinners, or soon will be.
Melissa
Hi Melissa…yes I will be on warfarin the rest of my life. For me…I made the best choice for me…and I would do it all over again. I will not leave this world one second before God wants me…..it doesn’t matter if I am pacer dependent or in afib….HE controls each beat…and each breath each of us takes.
I know of several people who had the maze and mini maze and it didnt work….
For me..this was my answer….ku med center doctors agreed.
I have life again….it’s quality over quantity for anyone.
Pam
The following is a small part of a study done at Mayo clinic………..
Although the observed overall survival among the patients in our study who underwent ablation was significantly worse than the expected survival among matched controls from the Minnesota population, the observed survival among patients without overt heart disease was similar to that of the general-population controls, and no deaths occurred during follow-up among patients with lone atrial fibrillation. Survival rates were similar in the group receiving medical treatment for atrial fibrillation and the group that underwent ablation of the atrioventricular node. These observations suggest that permanent atrioventricular block and implantation of a pacemaker after ablation of the atrioventricular node do not have an important adverse effect on survival, thus reassuring patients and physicians that ablation of the atrioventricular node is an acceptable treatment option for symptomatic atrial fibrillation that is refractory to medical therapy.
SOURCE INFORMATION
From the Division of Cardiovascular Diseases and Internal Medicine (C.O., A.J., P.A.F., P.J.P., T.M.M., R.F.R., M.A.L., D.L.P., B.J.G., S.C.H., W.-K.S.) and the Section of Biostatistics (D.O.H.), Mayo Clinic, Rochester, Minn.
Pam,
Do you know how long the follow up was on the Mayo study that you cited? It would have to be many years to conclusively conclude that there is no difference in survival.
There is enough data to show that the more and longer you are in afib (with AV node ablation, you tend to be in afib all the time), the more fibrosis builds and the greater the risk of stroke. For someone who is young, like you, that is concerning. Please be almost “religious” about taking your warfarin consistently, and making sure your diet is consistent, too. Unless you’re testing your INR every few days, you won’t know if your INR might be varying day by day.
Are you doing INR self-testing where you can test more frequently?
Mellanie
I’ve had a mini maze in 2007 which was not successful. But after finding out a couple of years later that I have celiac disease and going on a gluten-free diet, I was afib free for over a year, and after that only had short episodes every four to six months.Until a couple of months ago, that is. Then I developed atrial tachycardia that just wouldn’t quit.They went into the left atrium to try and ablate it but found that all my problems are coming from the right side. Much more complicated.
Ok, so now I’m on cardizem and digoxin, but I still keep going in and out of afib and atach all day long. I don’t feel good and have no energy whatsoever.
Saw the electrophysiologist yesterday and he said I had three options:
1. Keep going the way I am. (Not recommended and really not possible. I wouldn’t want to feel this way for the rest of my life.)
2. Have an AV node ablation and get a pacemaker. No more drugs other than warfarin for the rest of my life.
3. Try an ablation in the right atrium. He gave that a 50/50 chance of success. Also I will have to wait a couple of months for that because I developed a blood clot in my leg after the left atrium procedure, and it hasn’t dissolved yet.
I have no energy and feel my heart beating crazily almost all of the time in spite of the drugs. The EP admitted that the AV node ablation was the “last resort,” but thought that maybe I was at that point. I must say, I’m getting there.
I keep confusing the right and left atria. They went into the right one, but my troubles are in the left.
It doesn’t look like anybody is reading this, but I’ll give a final update anyway.
I went to the Mayo clinic and had a regular ablation last Monday. So far, so good….
@gudrun45 :
Gudrun,
I’m sorry – you posted while I was on the road (seems like I was gone from March-July, and I’m headed back out again, which is why our new operations manager is starting to watch over the blog for me).
I’m glad you had an ablation. Last I remember hearing, your afib was under control with a gluten-free diet. I didn’t realize it had come back. I sure hope the ablation finishes off all afib/flutter for you.
Mellanie
Hope all is well, I am reading and following your posts, apologies that I have not commented before.
Since my previous post I have stayed in sinus, fingers crossed touching wood being good taking the pills every day!
We are not confident it will continue, as this is often my good time and with the bad weather I get worse, hAd a really good visit to The Heart hospital London great doctor, wanted to talk up being well and keeping me there usually they are happy to tick the box and push you out the door, so she is looking at other meds perhaps an ablation as I seem to have swapped from fibrilatioN to flutter, good luck Gudrun x
I have a AV Node Ablation scheduled in two weeks. I have had irregular heartbeat for a number of years and 2 years ago I had a stroke and congestive heart failure. I have constant A-fib now despite taking Digoxin, Soltolol and other meds for BP and water. I’ve had a Boston Scientific D-fib, Pacemaker device now for a year and a half. I don’t like all the meds and feel the side effects (tired and just that general feeling of being drained). My EP and Cardiac doc feel the AV Node Ablation is going to work and that it will hopefully slow the wear on my heart. It makes sense toi me that cosntant A-fib like I have (never goes away) will eventually wear out the muscles of the heart. Reading all of this now has me wondering….
Hi John,
What is your age? Have your doctors considered catheter ablation or surgery? You may be interested in joining our discussion forum to learn what others have experienced and to share your own story with others. To join the StopAfib.org Discussion Forum go to: http://forum.stopafib.org. To post or ask questions, you’ll need to register. Instructions for registering and getting started are here: http://forum.stopafib.org/index.php?showforum=25.
Regards,
Melissa @StopAfib
I had my av node ablation yesterday…and already feel like a new person!!! For me it was a last resort after med failure..ablations failure…I tried it all….don’t let people scare you… For some of us it’s the only answer! 🙂
What to do after all Meds have failed to stop afiband catheter ablation didnt work. Cardiologist says no to av node ablation. He says i will still feel the a fib. True or not?
Lori
Hi Lori,
Yes, those who feel their afib before the av node ablation tend to still feel it afterwards. Has your doctor mentioned surgery? You can learn more about it here: http://www.stopafib.org/cured.cfm.
Melissa
Hi Lori…I feel the afib VERY LITTLE IF AT ALL! Before the av node ablation it made me fell sick…now I have life back! Pam
My husband is having this procedure next month and after reading this it terrifies me he has no other choices left to him apart from heart transplant i see my husband suffer every day and all he does is sleep most of the time as he feels so ill I am not put off by your comments most of us have freedom of speech but i think it is unnecessary to frighten people who are so ill they have no other choice and i feel this was not wrote by a medical practitioner every case is different.
Hi Marie,
Has your husband had surgery? If not, he still has lots of options besides av node ablation.
Also, what is his age? For those over 80 who are very frail, it may be an apropriate option.
Melissa
Hi melissa my husband is 61 he is having the ablation next tuesday has been told there is no other option only heart transplant which if this doesnt work will be next on the list, pls tell me what are the other options.
Marie,
This is probably a good question to post over on our StopAfib.org Discussion Forum: http://forum.stopafib.org. To post or ask questions, you’ll need to register. Instructions for registering and getting started are here: http://forum.stopafib.org/index.php?showforum=25.
This is a great place to ask these kinds of questions and to learn from others in the patient community who are dealing with similar issues, and who can also share their experiences.
Melissa
Marie,
You may also be interested in looking through our information on surgery: http://www.stopafib.org/cured.cfm.
Melissa
No surgery for me. I have had afib for 3 years….keep it controled with good diet….digoxin …and whole food supplements Cardio-Plus. I try to keep my schedule less demanding.
My daughter in law’s mother went in for this. It was supposed to be simple over in an hour. They punched a hole in her heart. It became unrepairable. She died on the table, it was a shock to everyone
I would rather have open heart surgery. At least they can see what they are doing. This happened two days ago at Cottage Hospital In Ojai California
Carol,
I had a hole punched in my heart in july, 2012. the doctor did not know what he had done, my body filled with blood and i almost died while i was in icu. I am looking for all the information i can find on this subject.
Thanks, John
John, we send our sympathy. What kind of procedure were you having?
Melissa
My daughter in law’s mother went in for this. It was supposed to take an hour. They punched a hole in her heart and she died. Everyone is in shock! This just happened. Make sure this is your only choice.
Thanks for sharing, Carol. We are sorry to hear this has happened, and our thoughts go out to the family.
Melissa @StopAfib.org
My mom is 88 and her heart rates been widely fluctuating, going as high as 180 and as low as 40, her doctor has repeatedly said she is not a candidate for pacemaker, and has unsuccessfully tried to control with drugs. Out of the blue he’s decided on a pacemaker for her tomorrow, my sis just heard of the cardiac ablation and I don’t feel we know enough to even discuss it, her pacemaker procedure is pretty soon and I’m just hoping someone can comment in a constructive way.
Hello, (my first post here just to share)
I started a-fib at 64 and over the past two years had had two ablations. I take Sotalol 120 mg 2x daily. I go into a-fib about twice a month and it lasts for about 4 hours.
The Sotalol keeps my heart rate so low that when I exert myself (like from a sitting position to walking) I am huffing an puffing, feel drained and tired. After a stress test this month, all mechanical issues (muscle, valves, arteries) are fine. So to give me the energy on demand for a more normal heart function, I am going for a 2 chamber pace maker withOUT the AV node procedure. I will still be on Sotalol with the pace maker. The pace maker does not fix the a-fib issues. In about 6 months after the pace maker, I may have another ablations, but my doc says the AV node procedure is too final and I am too young for it. Time will tell. Goodluck to all of you and make it a Merry Christmas as best you can!
I had the av node ablation last fall as my last resort for a normal life. I had everything..ablations….all meds…and still the horrible fast rate… It was my last resort….
Don’t let people scare you…for some of us it is the last resort…..and my results…. Well I have my life back…..yes I still have afib…but hardly ever feel it…and my rate is normal thanks to the pacing.
So don’t go scaring people..everyone of us is different….and I can now do all I did before afib…in fact I just got back from a cruise….my only regret … That I did t do it sooner..I’m 58 now.
If anyone wants to email me please do.
Jpdawoods at windstream.net
Pam
ha dont belive the bull here, best thing i ever did ablation 6 yrs ago ,
Hi Bobby, did you have a catheter ablation or an AV node ablation?
AV Node Ablaation should ALWAYS be a last resort. Sometimes, it is the only option while waiting for a heart transplant, or instead of a heart transplant. Trust me, none of us who had an AV Node Ablation, wanted it. We tried EVERY other option out there from traditional to alternative. We were at the point of losing our jobs to losing our lives because of the medical state we were in prior to our procedure. Do I like some of the side effects, no. Do I like being alive? Do I like being able to live a normal life again? Do I like not having to be in the hospital every week for heart failure symptoms? Do I like having an EF over 20 again? Do I like being able to hike, bike, and even walk up a flight of stairs again? My answer is absolutely YES!!!! Again, an AV Node Ablation should always be a last resort. And, yes, some of us waited longer than we should have to have this done, simply out of fear, but for some of us, including me, it was the right decision! I’d rather be writing the to you from a hotel room after a day of hiking and enjoying the outdoors, than writing it from a hospital room dying of heart failure, cardiomyopathy, and every other symptom from 50+ years of serious heart trouble, including hearing the words “without a heart transplant, you will not be with us more than a few months” like I was less than a year ago. Whether you agree or not, this was the right thing for myself, and many others.
I’m Scheduled to have AV Node Abulation in a couple of weeks. I have been very reluctant to do this but your experience has made me feel better about it. Ihoping the results are as good as yours.
Hi Clifford….I had an av node ablation last fall…best decision I ever made….I have my life back….do I still have afib…yes…but nowhere near the symptoms I had before..no meds helped me…it scared me too….but soooo glad I did it! Best wishes Pam
Jpdawoods at windstream.net. Email me
Pam how long after the AV ablation did you start to feel better ? My 83 yr old mimbis breathless And can hardly walk without sitting down her a fib was bad too though praying that this will eventually work for her
Hi Pam,
Thank you for sharing your story concerning your mother’s afib. I would suggest joining our patient forum so that you can connect with others. It is located at http://forum.stopafib.org/. There you can talk with other patients who have a great amount of knowledge and experience. You may want to post your story and questions there, and you may also learn a lot from others who have already shared their experience.
You’ll need to join to see and participate in the discussion. To do so, go to forum.stopafib.org, and click on the big red button that says, “Sign Up”. Once you sign up by registering your email address, your preferred username, and a password, you’ll receive an email to confirm your interest in joining the forum. Click on the confirmation link in that email, and you are ready to go. You’ll be able to log into the forum, read the discussions, and participate. I hope that you are able to find others to connect with there that can give you advice, suggestions, and hope.
You can find additional instructions here: https://www.stopafib.org/newsitem.cfm/NEWSID/623
We wish your mother sinus rhythm.
Hello Carrie,
My mom is scheduled for an AV Node ablation on July 8th and we are scared. I see from your post that you had it done a while back. Do you still feel that it has improved your life? Any regrets or anything you can share from this experience.
Thank you,
Dalia
Let’s see, PRE AV node ablation. 20 cardiversions, 6 ablations, on every medicine you can think of. In the hospital 3-4 times a month for 4 years. The ER nurses knew me by name……not the place you want to be recognized! POST AV-node ablation. Hospital or ER visits after 18 months…..ZERO! I agree it is not the first thing you should do. I mean look at what I went through but if you are telling people not to get this done that is foolish. Are they suppose to live the next 1/5/10/20 years in agony and be miserable, “hoping” for another cure?? It’s a last resort but I can tell you this, as a fellow Afiber it was the best thing I did. I coach 3 teams, workout 5 days a week, ski, go on vacation all without that fear.
Thanks 3 weeks from now I will be bringing my husband home from an avnode ablation and pace maker I /we are scared I dont have faith in it as he is a recovering alcoholic and just started to be dry again.. I think he should wait and do the rehab first but… Your comments helped me as I am the one that is negative.. it has pushed us almost to a divorce as I have filed he started drinking again because he felt bad part of that disease but.. it did not help his heart that is for sure
Thanks for your help
it does make me feel a little better and I am just ready for it to be done and maybe a bad memory.
Hi Scott
I totally agree with you that they are foolish scaring people! It upsets me to see this article and what they are putting people through after their doctors have suggested an av node ablation
I am 59 and have my life back!
Don’t let this article scare you people!
I’ve been there done it and it gave me life again!
Write to me anyone who has questions…I’m here and I’ve been through it!
I read this article before mine and it scared the bejeebers out of me…and there was no one to talk to!
[email protected]
Pam,
We are not trying to scare people – we are trying to help them find their best option. AV node ablation is a treatment of last resort, when nothing else has worked. It’s not usually the best option for a young person, and typically is reserved for those over 80.
Perhaps you might find of interest what Dr. David Wilber, one of the world’s top afib experts, said:
“”AV node ablation is a last resort procedure, used when nothing else works,” Wilber said. “The goal is not to eliminate afib but to prevent the rapid conduction of the afib into the ventricle. The procedure artificially induces heart block and, in that case, patients have a rhythm of their own, but only 30 to 40 beats per minute, so a pacemaker is required to provide an adequate rate for exercise and activity.” AV node ablation is reserved for people who are in permanent afib, older patients who are weak or those who are not candidates for other forms of treatment.” [Source: EverydayHealth.com (http://www.everydayhealth.com/heart-health/heart-procedures-to-expect-when-you-have-atrial-fibrillation.aspx)]
[By the way…Dr. Wilber is a member of our StopAfib Global Medical Advisory Board (http://www.stopafib.org/board.cfm).]
Mellanie
I wish I knew the ages of those who have had the AV-Node Ablation. I am 74 and have suffered with A-Fib for 3 1/2 years. I have been hospitalized 8 times with A-Fib diagnoses and 2 times with other issues that have, unfortunately, triggered the A-Fib. I have a pacemaker. I can’t even remember the names of all the meds I have been on for the A-Fib….currently I am on Nadolol which is not helping at all. My EP cardiologist is recommending an AV-Node Ablation. Seems I have run through most all of the meds I am able to take. Any comments from some others who are my age??
Judith: Haave had an ablation or a second or third? That should be the first thing you consider. Get a second opinion.
Judith, my dad went into permanent a-fib and could barely function. He finally had an av-node ablation (with pacemaker) at the age of 71. It gave him his life back. He’s 76 now and doing well.
I wanted to say one more thing. When my dad developed permanent a-fib, my sister and I researched all of his options. Almost six years later, I’m dealing with paroxysmal a-fib and researching options once again, and I am disappointed to realize that there doesn’t seem to have been much improvement in what’s available out there to people with a-fib. So waiting to take advantage of advances in medical technology may mean waiting for years and years, and some people just aren’t able to wait.
Hi Pam, I think we all wish advances in atrial fibrillation treatment would evolve a bit more hastily. You may be interested in discussing treatment options on our discussion forum to learn about others’ experiences with different treatments. To get to the StopAfib.org Discussion Forum, go to: http://forum.stopafib.org. To post or ask questions, you’ll need to register. Instructions for registering and getting started are here: http://forum.stopafib.org/index.php?showforum=25.
Melissa
I am 73,fot AF for 5 year,3 on Amiodarone, got AIT bad,went hyperthyroid,hypo. Amio.worked great,but I stopped because of bad side effects and promptly went afib on and off, now I am on Ditaizem240, small dose of atenolol, losartan& 20mgXarelto (Xarelto is good but HI$$).
They say as long as my HR is down (70-90) and I am not limited (I am not too much), no need to rush into ablation. There seems to be a new theory that Afib is not deadly if the HR is controlled so as not to weaken the heart, etc.
Patience is my limitation, but as we wait new treatments come along which can be big improvements.
Carl
I
Hi Carl,
If you would be interested in an ablation at some point, it may be harder to get once you get to about age 75. You may also be interested in discussing this in our forum. To get to the StopAfib.org Discussion Forum, go to: http://forum.stopafib.org. To post or ask questions, you’ll need to register. Instructions for registering and getting started are here: http://forum.stopafib.org/index.php?showforum=25.
Melissa
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We just added a related article, Did Pope Benedict Have an AV Node Ablation for His Atrial Fibrillation?, at http://atrialfibrillationblog.com/did-pope-benedict-have-an-av-node-ablation-for-his-atrial-fibrillation/
I have had 2 ablation procedure for Atrial Fibrillation now i have A.p.C What about a pacemaker for this?
Hi my name is sharon and iam 56 years old had an ablation done cuz of a fib n thought I was gonna die when I came to could not breathe chest felt like a elephant was sitting on it n the ep doc was telling my family everything went fine!!!!! Now I am worse than I was am on oxygen 24. Seven can’t walk three feet I go into afib my regular cardiologist is sending me to okla city to two ep docs n possibly end up getting a pace maker right now I have no quality of life so please get a second option before you have an ablation done
I had an Av Node ablation in 2001 and it saved my life. I could not function before. I was in permanent afib and my heart output was so bad I could hardly walk 20 feet without resting. 6 months after the ablation I was exercising reguarly. Mine may have been an extreme case as my doctor said that I may have only been able to live a couple of years with the way my heart was functioning, this was twelve years ago. I still walk 2 miles 5 days a week.
Have been in AFib for years now. Have had numerous medications which worked for various periods of time. When medications ceased to be effective, I underwent 3 cardio versions (all unsuccessful).
Now that my Afib has me in an almost constant feeling of fatigue and breathlessness, my EP want’s to do an AVNode ablation and a pacemaker insert. He was going to do them simultaneously but because of a violent cough I have had for 6 months, he has opted to do the pacemaker first in order to make sure a coughing spell does not dislodge the leads to the heart. He then will do the AVNode ablation approximately 10 weeks later. What am in for
???????????
Hi Norman, you may be interested in asking your questions on our discussion forum. To get to the StopAfib.org Discussion Forum, go to: http://forum.stopafib.org. To post or ask questions, you’ll need to register. Instructions for registering and getting started are here: http://forum.stopafib.org/index.php?showforum=25. I hope you find the answers you’re looking for.
Melissa
Hi Everyone,
I had my av node ablation last fall. I have posted on here once before.
It upsets me when you google av node ablation and up pops this link…that says…why you should not have an av node ablation.
I am so VERY GLAD I had mine.
I truly did get my life back!
For me it was the only option to a half way normal life.
I kayak again….and it was a piece of cake going though it!
my email is jpdawoods at windstream.net …..Please email me…I’m here to answer questions and share my experience. I was 58 when I had it done.
Please don’t let this hedline scare you away from this option.
Pam
Pam,
We hope that, since you had your AV node ablation at such a young age, you are on anticoagulants and will adhere to them religiously for the rest of your life. Women who have had an AV node ablation are at increased risk of stroke, so please read this article for more info: http://www.stopafib.org/newsitem.cfm/NEWSID/452.
hi pam, i was glad to here that someone had something good to say about this. im 55, i just had my av, done and i have a pacemaker and defibulatou, i hope i will be feeling better soon to. this page scared me when i read it, it made me feel i had made a wrong dissiontion.
Oh and to add to my email….
I find the article very poorly represented…
when it list why not to have an av node ablation
It says “now why would you want to have an av node ablation? Duh?”
I find that offensive…it makes us sound stupid…..the ones who had it done and were given our lives back.
I know several people who had the there hearts “sliced and diced” by the maze procedure…..only to still be in afib and worse off.
Each case if different…..but to scare people about this procedure is just wrong!
I do believe the article should be re-written…instead of scaring people to death……if I had listened to this…I would not have gotten my quality of life back.
Thank you
Pam
For those who are 80 or more, AV node ablation may make sense. However, for those who are younger, doctors encourage pursuing other options such as catheter ablation or surgery. AV node ablation leaves people in afib all the time, which builds up fibrosis in the heart and increases the risk of stroke, especially among women. Therefore, we stand by our opinion that AV node ablation is a procedure of last resort. After having an AV node ablation, please make sure that you are religious about taking anticoagulants to prevent a stroke.
Of course it is important to be on Coumadin. I will be for the rest of my life.
There are people in their 20’s and 30’s who have had av node ablations and are doing fine and have their lives back.
For some of us all the other options have failed.
To scare people after their doctors recommended av node ablations is wrong!
I will gladly talk to anyone who has a question about the av node ablation
My email is [email protected]
Pam
MAG. MY MOM RECENTLY HAD A STOKE ALONG WITH AFIB HEART RATE A PACEMAKER WAS PLAED BUT NOT FULL DEPENDENT, HER STROKE HIT HER HARD WITH DEMENTRA. SHE CANT WALK, HER SPEAK A FULL SENTIENCE,DOSENT UNDER STAND THE WHAT A SPPON IS ETC, CNAT FOLLOW COMANDERES, DR, ADVISINF ME TO PLACE HER FULL DEPENDENT Why? she has no quailty of life now, sad enough. she will no longer get better has clots in heart, lung and legs? i dont want my mom to go full Av ablation but family members feel this shold be done. help confused and fuzz strated.
I’m so sorry about what your mother has gone through. Is her doctor recommending a full AV node ablation? If so, why? Can you get a second opinion? I don’t know enough about the situation to do anything more than to provide these questions for you to ask the doctor. Good luck. I hope you’re able to find solutions.
hi am kyle am 26 years old an in march this year i had my 4th ablation and finaly an av note ablation with a permanent pacemaker i have found that i still feel the same problems i had before and the only consern i have is my pacemaker to have a problem but i cope better with it now then i did before aa had the pacemaker all thou some times i wake at night wishing i didnt have it but i am alive and for that i am greatful
This year April 15th I had an Av Node ablation. I had been So sick with Atrial fibrillation & no medication was working. I would spend once a week in hospital because with my Atrial fibrillation my Defibrillator would pick it up as something more serious & shock me. So I was being shocked pretty much once every week. My ejection fraction (heart function) was less than 20%, I couldnt do a thing. Fast forward to 5 months after my operation, absolutely NO hospital stays, Heart function up to over 40% and I am able to get out & live life again. I have NEVER felt better & I am so happy I did it. I am only 35 years old…weigh up all the pros & cons but if you are really scared about how you will be after it believe me, it will probably change your life. Good Luck!
Hi Emma,
Im a 62 male and have a 4 ablations in the lastfew yyears. I’m now being told my only option is now a v node ablation. I was wondering if you could update me on your condition.
Thanks
Bill
Hi everyone. With eight episodes of being shock by my defibrillator,and about 10 hospital stays I had no choice but to have an AV NODE Ablation. I was in my late forties when this happened.I am 54 now. My quality of life has been ok . Some days are good,others not as good. I just had my pacemaker battery replaced last year. AV NODE ablation is survival procedure. I don’t regret doing it for i sure have done way better than in the position i was before. I cannot take Coumadin nor any anticoagulant except for 325 mg aspirin. Iam very sensitive to medication. It has been about 10 years that i had the procedure done.So iam the exception to some of the rules that being commented in this forum.
Adry, Thanks for sharing. We are glad you are doing better now. Melissa
Adry,
Thanks for sharing your story. I am concerned by the fact that you’ve had an AV node ablation at such a young age and that you are not on anticoagulants. Staying in afib all the time, such as after AV node ablation, increases your stroke risk because it continues to build fibrosis (scar tissue) in the heart. This fibrosis strongly correlates with stroke risk.
In case your doctor didn’t tell you, you can still have surgery for afib (usually open heart surgery), even with a pacemaker or defibrillator in place. And if you truly can’t take anticoagulants, then you might want to consider at the same time having an AtriClip or other device implanted that closes off the left atrial appendage (source of most afib-related clots that cause strokes) to prevent strokes.
Good luck.
Mellanie
There is no evidence that she is in afib all the time. Having an av node ablation is not just for chronic afib or proximal afib. It certainly does not mean that after the ablation that you are in constant afib. Av node ablation is also performed for vt and syncope. Putting fear into someone is unjust. She is happy with her life and I’m sure her cardiologist is her best resource for advice.
There is a device called a watchman which is like an umbrella that occludes the left atrial appendage, approved in Europe, but not approved by FDA for over 6 years – the drug companies would lose the profits from all the new blood thinners. It is effective in preventing clots forming in the left atrial appendage which is where clots form in afib. I am a 47+ year survivor of the rest of the barbaric procedures for afib. 15 cardioversions, 4 ablations (last AV node ablation) and meds. Most miserable after AV node ablation. My advice to all would be educate yourself, research, modern medicine is not always our friend.
Hello,
I am 33 years old. I had my AV Nodal ablation when I was 26. I did not have a pacemaker. I had a bad reaction to the anesthesia, so my understanding is my ablation was not fully completed. I am not on any medications for blood thinning or anticoagulants. I do still feel the fibrillation but I am much better than I was. I haven’t had a true attack since my ablation but it took over a year for me to truly feel well. Sometimes I have sharp pains or feel vibrations or have shortness of breath but so far so good. I haven’t followed up with a cardiologist in a few years. I think I will soon though.
Thanks for sharing. You may also be interested in joining our StopAfib.org Discussion forum. Instructions for getting started are here.
I am no doctor, nurse or overly intelligent female, but I sure could do with some down to earth advice please.
My husband is 84 years young and we are both scared. 2008 he had double by-pass, 2012 has 2 stents inserted and has been in good health since.
In May 2014 he started suffering a lot of breathlessness, puffing just to walk 10ft, silly man didn’t tell me for 4 days that he was getting a “little” bit of chest pain too. I pulled the plug and called ambulance and off he went to hospital. Turned out that he not only had a heart attack but plus a stroke too. There was some fluid around heart but lungs were and still are clear.
He was diagnosed with “Atrial Fib”, didn’t response well to different tablets had a lot of vomiting and the other end too. They tried twice to kick start his heart but both times within a day was back racing. They ended up sending him home in this condition saying that he needed to have a pacemaker inserted in 2 weeks. He was extremely uptight and they wanted him home to relax a bit.
Pacemaker was inserted in 18th July and we go to see Cardiologist in 8 days with the intent that he will be having “AV Node Ablation” within a week.
He is still extremely breathless maybe even a bit worse. They are saying that this procedure “will” fix the breathlessness. Have been reading different articles on web and in particular here but have not read anywhere the problem of breathlessness being a symptom.
Any comments would be so helpful to me please. Jan
Jan, you may be interested in sharing this story on our patient discussion forum. There you will get a lot of ideas and learn how others are managing their atrial fibrillation. Here are instructions on getting started.
I had an av node ablation done + dual chamber pacemaker fitted at the age of 46. Medication was no longer working and I felt it was a healthier way to go. I have been on warfarin which is quite stable and I have it checked once a month. I preferred my pacemaker to be set to work from the top chamber. I was able to walk, play golf and have an active life. I also took a beta blocker as I could still feel the afib but was able to function well. I am now 56 years old. 2 years ago the pacemaker had to be set to bypass the top chamber, atrium, because the afib had got worse. Since then I have felt short of breathe and tire very easily. I cannot walk uphill and am not as active as I used to be with the result that I am not as fit as I used to be and am gaining weight. I have no heart disease and my cardiologist has recommend that I have a catheter ablation done so that my pacemaker can be set to operate from the top chamber. I have spoken to a few people that have had catheter ablation done but none had a av node ablation & pacemaker as well. Would love comments from anyone with the same problem.
Maureen Cuff, Port Elizabeth, South Africa
Hi, Maureen. I have not heard of a catheter ablation on top of an AV node ablation, either. You may be interested in sharing your story on our patient discussion forum to see if others have had similar experiences. Instructions for signing up are here.
Melissa
My 83 year old mother has a defibrillator in her. She is on a lot of medicine…some to slow her heart down. The meds make her dizzy and she see’s things floating around that are not there + her lower back starts hurting around her kidney’s if she stands a bit. Today her doctor talked her into getting this AV procedure done. I’m scared because something could go wrong and once it’s done there’s no going back. She’s been shocked by her defibrillator around 3 times. She received the defibrillator in 2012. She only has 1/3 of her heart working.
Sharon, I’m sorry to hear your mother is going through this. You may be interested in joining our discussion forum to see how others have been managing their afib or helping loved ones manage their condition. Getting Started & FAQ is here.
Melissa
I don’t understand why you want to frighten people from having the procedure if it’s their last option. My husband is 65 had his done last year and he is so much better and loving life again. Bowling going to the gym,swimming it’s wonderful to see him enjoying his life…
Kay,
For those who are 80 or more, AV node ablation may make sense. However, for those who are younger, doctors encourage pursuing other options such as catheter ablation or surgery. AV node ablation leaves people in afib all the time, which builds up fibrosis in the heart and increases the risk of stroke, especially among women. Therefore, we stand by our opinion that AV node ablation is a procedure of last resort. After having an AV node ablation, please make sure to be consistent about taking anticoagulants to prevent a stroke.
We are glad your husband is enjoying his life again. If you would like to join our discussion forum, we would love to have you. Sign up here.
Melissa
DO NOT HAVE AN AV NODE ABLATION! I had one a few years ago. It caused heart failure. I already had a pacemaker. A new pacemaker was installed with an extra lead that goes through a vein and then is attached the ventricles.
I am 54 and recently had dual lead pacemaker placed. I am now scheduled for an AV node ablation, which I am unsure of. I have had 3 heart surgeries, the last in my twenties that replaced my mitral valve. The doctors say the Afib is a result of scar tissue. I did have an ablation 4 years ago to get rid of some of the scarring, but they say it comes back and another such ablation is to risky. Is a dual lead pacemaker and AV node the common practice?? Does most people with pacemakers also have the node ablated?
Tammy, you may be interested in sharing your story on our afib patient discussion forum. Others may have been down that path before you and may be able to answer some questions you have. Good luck!
Melissa
I am wondering if you have had it, and how you are doing??
Frankly you are misinformed. Look at the results published by the Atari all fib heart group at Intermountain Health. Largest study of A fib patients in world (6000) with 2 deaths.
Check out their articles.
I’m an MD they treated my refractory A fib. Best decision I’ve ever made.
You need more information unless you’re a practicing Cardiologist. If so you’re out of date. Ivory towers have a place. All Intermountain Cardiologists
are medical school faculty members.
I had an av node ablation about 4 months ago. first I’ve done well I play golf do work projects etc. The only problem I’m having is that I have these anxiety attacks and I can’t stand to set down, or lay down because they get worse. What I am wondering can this be a side effect of having an av node ablation.
Jimmy in Prescott, Arizona
Jimmy, you may want to follow up with your cardiologist or EP about the anxiety attacks you have been experiencing. Also, you may be interested in joining our afib patient discussion forum to gain more insight about managing your afib. Instructions for how to sign up are here. Our active forum is full of others who have been managing their afib, and they may be happy to share with you their experiences with afib.
I’m wondering why the Lariat Procedure has not been considered an option to AV Ablation, I have been referred for ablation and think there must be another option beyond de-stabalizing the heart permanently.
I had AV Node Ablation last year and I have been recently told that “perhaps they were too hasty” in fitting it???? I have also been told that they do not know why I am so out of breath and ill as I “should not be”???? I have also been told that I am worse off now than before it was fitted.
They now want me to go on a cardiac rehab course when I have to be wheeled to the physo by a porter as I cannot walk very far at all, sometimes only 10ft before I am totally out of breath.
Tom
Tom, I’m so sorry to hear you’re having a tough time managing after your AV node ablation. You may be interested in sharing on our afib patient discussion forum. Instructions for how to sign up are here. Our active forum is full of others who have been managing their afib, and they may be happy to share with you their experiences with afib.
I had a v node ablation in August 2014 ,its been going on 5 months and I still don’t feel better,I was told ,you have had 3 ablations,they didn’t.work,you have been on meds ,they haven’t worked, we don’t have any more options, get the v node ablation , and a dual pacemaker.I was hesitant to sign the paper my gut told me that I could try different antiarrhythmic drugs .l have two sisters their a fib is being controlled well,one sister did have a bunch of ablations that never worked she is on Multaq and doing well, my other sister is on Norpace and no a fib .I was wondering does anybody know if I could try some other antiarrhythmic ,do you think I could get out of afib and get to a sinus rhythm? They want me to get a three lead pacemaker.I forgot to tell you I had a echo cardiogram and it showed my heart was not pumping well my ejection fraction was only 35.They had taken me off my sotolol. I still take Pradaxa, so they put me on Coreg and lispineral.l used to do all the country dancing, but I get. out of breath and can do the slow dances .I cant walk fast I get out of breath. Just about any thing gets me out of breath I just can not tolerate a fib ,so that’s my problem ,sincerely Paulette L.
Paulette, Thanks for your comments. We are sorry to hear you are not feeling better even after your long list of procedures and meds. You may enjoy asking your question over on our afib patient discussion forum where we have an active group of knowledgeable patients who may be able to give you feedback based upon their various experiences in managing their afib.
my hubby had his done several years ago. It has improved his life. he has gone back to the gym and bowling…He is enjoying his kife again
.
My mom has afib 18% of the time which is not to bad they want her on blood thinner but she’s scared cause she had bleed in stomach due to aspirin any thoughts or choices please
Kim, The AHA/ACC/HRS Guidelines for treating Atrial Fibrillation were updated less than a year ago and announced at ACC 2014. The guidelines had several updates, but one you may be interested to know about could be the update to the stroke risk calculator. Now the CHA2DS2-VASc is recommended for calculating the stroke risk in patients. A score of 2 or greater would indicate a stroke risk high enough to use anticoagulation. This calculator gives women a point where men would get zero. There are also higher risks based upon age. If you would like to learn more about that, you can read about it at StopAfib.org. While weighing the pros and cons of anticoagulation, consider the risk of an afib-related stroke (and what a stroke could mean for you and your mother and you family). While it may seem that 18% is “not that bad”, her doctors believe she is at an increased risk of stroke due to her time in atrial fibrillation, and it’s worth considering protecting her brain and her health.
Additionally, you may find the afib patient discussion forum to be a useful resource for you. We have many patients participating in discussions about living with afib. Here’s info to get started.
Melissa
My wife has been suffering AF for 15 years with extreme bouts over 200 bpm. In the last two weeks she’s had at least 7 days of it, some lasting a whole day. It has also created a nasty chronic fatigue synd. that sees her faint at times. Over the years she has tried all of the drugs and none worked after 2 weeks, besides the side effects were horrendous. She has suffered a stroke, broken back from fainting and other health problems, been on Warfarin at 7mg per day, now on the latest blood thinner. She has had 5 ablations and while the last one was sort of successful for a few years the problem has broken through again. Her Specialist is highly respected and at the “top” of his profession. We consulted him today and he suggested that a 6th cryo ab is not the go, because it will most probably be destined for future failure if at best it works in the short term. Consequently my wife was presented with the AV Node Ablation alternative. At 69 years, what does she do? We are both questioning the options, but her life now is almost at a standstill. She can’t go out, not even to visit friends, because the risk of fainting is 90%. She can’t stand her heart fibrillating at 200+ for hours on end. The decision is hers and she’s examining the moral and religious upbringing she’s had that says – “God gave me this heart! What do I now do?” I’ve read all of this column of Q & A’s and am interested in the outcomes of those who recommend against the AV Node Ab. Many are from people who had a negative outcome, but hey why wouldn’t you be disappointed and need to write and express your thoughts. It’s my guess that most successful cases don’t need to read this column?
Rob, you may be interested in asking your question on the StopAfib.org Patient Discussion Forum. There patients will be able to discuss with you their treatment paths, and why they chose what they did.
Melissa
Thank you Melissa,
I am following up with the latest news about my wife Grace’s procedure that we were concerned about when I first wrote. She had the AV Node Procedure last week (6 days ago) and is home “alive and kicking”. She has made a reasonably speedy recovery to this point of time and although she is still suffering from the medical invasion with some pain and healing, the outcome seems to be good. I say that with a conservative observation because she is experiencing different heart rhythm that is directed in the main by her pacemaker, together with an unusual feeling from time to time that possibly is fibrillation. It doesn’t occur often and hasn’t happened for periods of time as it was before the operation, but the feeling is unusual and is accompanied by tiredness and sometimes exhaustion. That doesn’t stop her from doing her household chores and despite my suggestions that she should slow down, she does have determination to get through the process as quickly as possible. Today I’ve noticed a vast improvement in her energy level, so the healing is positive. If this blog helps anyone, then I will write again in a week or so to advise of her condition. I’m sure there is a fair way to go before she attains independence, but every major medical procedure has a healing time that is extended when you are heading for 70. Incidentally, much of what I read about the AV Node Abl has been experienced by Grace, so we are now able to relate to that with confidence. The issue I have is that somewhere I read that a risk of dementia is increased by this procedure. Given the quality of life Grace had over the past 15 years, such opinion is not worth considering when the evidence is unsupported!
So glad to hear your wife is doing well. My Dr. has recommended an AV Node ablation and I’m a little nervous about it..I’ve experienced Afib for 25 years even though it was not confirmed by a doctor until 2009. I experience dizziness and get out of breath quite easily. While wearing a monitor, my heart stopped beating for 8 seconds. I didn’t faint but am uneasy that I may next time. I frequently have trouble walking from my car into the grocery store unless I’m pushing a cart. I have already had two ablations which were not effective so I’m not looking forward to having another to find that it may not be successful either.
Sara, Thanks for sharing your story with us. You may be interested in looking into our patient discussion forum to learn what others have done to manage their afib.
Melissa
Hello Sara, It is now over 3 months since Grace had her AV Node procedure. The jury was out for a while about her improvement, but I can truly say that there is a considerable change in Grace. The earlier fibrillation has changed, there is still fibrillation occurring, it is less than before, seems to be diminishing and she says it feels different. Overcoming several setbacks caused by the hospital stay was another problem, but overlooking those, the prospects for her future seem very good. Last weekend it was Mothers day and I can truly say I’ve not seen her look so happy being around her family, for a very long time. It is such a relief given the risks we have been considering. I guess her chronic fatigue will diminish in time also as she can now go on walks and meet with friends that were not possible toward the end of last year. Certainly the procedure won’t work for everyone, but we are now thinking we should have undertaken this earlier.
I had AV node ablation and dual pacemaker about a year ago for very symptomatic paroxysmal AFib. One week later I felt the old symptoms but with a tweak to the pacemaker I have been fine for over the whole period. My pacemaker check showed all working well and the episodes of AFib were intermittent but I hadn’t had any real awareness of these.
However, last week I was woken in the night by palpitations, my pulse was an AFib one and I felt ill. It lasted about an hour. The Pacing Clinic looked at the printout and said, more or less, that although I had had a period of AFib at that time, the ventricular beat was steady and that it wasn’t possible to feel irregularity. I was advised ‘not to feel my pulse’ and also that the pacemaker would slow down a too fast heartbeat…..
Is it possible that signals from the atria can break through the ablation and that the pacemaker can follow it? I am both disappointed and puzzled. Both I and my husband felt the pulse to be AFib and I feel I am not being believed.
Jo 72 years old Female UK
Greetings Jo,
Either we are being misled or Dr.s are being misled or possibly both.
I have suffered from A-fib for years. The first couple of years the A-fib was so intermittent they couldn’t detect it therefore they couldn’t diagnosis it or treat it. When the episodes became more frequent they were able to detect them with a 30 day event monitor and I was finally able to get proper treatment. I took the med route first and initially they worked but over the course of time they failed to work as well. My Dr. had discussed two other options with me, the first was having an ablation, the second was having a pacemaker implant with an AV node ablation. I was told that with an ablation there were no guarantees. He said often the procedure doesn’t take effect the first time around and you may have to go in for a second procedure and possibly more procedures after that. He also stated they were long procedures. He assured me the pacemaker with the AV node ablation would correct the problem. He also told me that I could get off all of my meds (except my baby aspirin) and I would have my quality of life back, so of course I opted for the pacemaker/ablation… I am on my fourth year with it and I have to tell you, I still suffer from A-fib and I feel every single misfire too. Initially the pacemaker seemed to work but over time I started feeling irregularities and when I would discuss them with my Dr. it was as if he didn’t believe me. He always seemed to have an excuse of what might be going on but seemed to deny that I was in A-fib. It wasn’t until Dec. of 2013 that I was in his office and while there I went into A-fib. He scanned it, saw it, admitted it, said he would “adjust” the pacemaker to correct it but to no avail, if anything it seemed to make it worse. I will also tell you that I suffer from chronic anxiety/panic disorder so when he kept trying to “adjust” my pacemaker and I was still going in and out of A-fib I went into an anxiety attack and as soon as that happened he pretty much dismissed the A-fib and said maybe you need to address your anxiety issues and then he left the room leaving me with the tech person. I was devastated. For four months I suffered before I finally decided to go for a second opinion. I told the new cardiologist everything that I had been through and he looked at me and simply said a pacemaker with an AV node ablation DOES NOT correct A-fib nor will it over ride it. He also told me my pacemaker was incorrectly set for my needs so he re-set it back to it’s original settings. So at the age of 60 years I am back on meds with a pacemaker and still going in and out of A-fib. It is enough to depress a person.
Believe me when I say I feel for you!
Kathy,
I’m sorry that you’ve had such a terrible time with this. You seem much too young for an AV node ablation.
Do they have you on a blood thinner? If you’re in afib all the time, I’d be very concerned about stroke risk and would want to be treating for that. Aspirin IS NOT EFFECTIVE at preventing afib-related strokes. And women are more at risk of strokes than men.
Mellanie from StopAfib.org
My AV node ablation, at age 73, four years ago, gave me my life back. (Previous to that, I had three failed PVI ablations, so the AV node ablation plus pacemaker was a last resort.) I still have afib (according to my pacemaker, which records every beat) quite often, but I am never aware of it, since my pulse is always normal. I bicycle 7 miles nearly every day, and am generally in excellent health. I take coumadin, and have my INR measured every month or two.
Tom,
I’m glad you’ve had success with the AV node ablation. Not everyone has the results you’ve had.
Mellanie
It would be super awesome if everyone under 80 responded well to the alternatives to A/V node ablation, but many do not. For those people, this post is very discouraging. My dad is 66 years old, and he is scheduled for the A/V node ablation this Friday. He has had three ablations, has been cardioverted several times, and has tried just about every medicine that is out there to treat A-fib. Nothing has worked for more than 6 months, and unfortunately he is not a candidate for open heart surgery due to CHF, Pulmonary Hypertension, Diabetes, and a slew of over health issues. One of his biggest problems with alternatives to A/V node ablation is that the medications used to treat A-fib are very dangerous for his lungs, and his pulmonologists don’t want him to take them. He’s basically been risking his ability to breathe in order to stay out of rapid A-fib (very sporadically, as he’s never out of it for very long). Here in Miami, my dad has access to some of the top electrophysiologists and cardiologists available, and they’ve run out of ideas to help him. He goes into rapid A-fib and they can’t get him out of it, and since his heart is already weak from CHF and pulmonary hypertension, it cannot handle long periods of rapid A-fib. It just can’t. I assure you that none of these doctors rushed into the A/V Node Ablation like it was his best option, even given all of his other health problems, which they knew of from the outset. They hesitated because they don’t like to do the procedure on someone as young as he is, and only do it as a last resort (I heard the doctor say those words last year, with my own ears, after he’d already been trying for three years, without success, to keep my dad out of rapid A-fib). There may be some quacks out there who are like, “Hey! Your heart just fluttered! Lets do an A/V node ablation tomorrow!” but I think they are probably in the vast minority. Of course people should get second opinions and weigh all their options and be well informed, but with diseases like this, many times there just aren’t any more options. My dad is officially out of them, and I am praying that his ablate and pace will make his quality of life better. Yes, he’s on anticoagulants, and will continue to be. Yes, the increased risk of stroke is scary (he had one A-fib-related TIA while on anticoagulants and one brain bleed, so trust me when I tell you that we don’t take risk of stroke lightly). But at this point, something has to be done or he won’t be alive much longer. A big thank you to those who have shared their positive ablate-and-pace stories. We’re trusting God for a similar outcome.
I too had afib and it couldn’t be controlled with medicine. I had a mini maze procedure 5 years ago and it has worked for me. This procedure is minimally invasive heart surgery, the surgeon cuts three small holes on each side and cauterizes the atria around the pulmonary vein. I do have a pacemaker. I am off Coumadin and just take a 325 mg aspirin. I am 72 years old. I do get breathless if I over exert. Have your dad check into this procedure. I had my procedure done at Missouri Baptist Hospital in Sf Louis. I would highly recommend this procedure. My afib was so bad that even at the hospital it couldn’t be controlled by the IV injection. Read about this procedure on the Internet and ask you dad’s heart doctor if it would be right for him.
Hi Barb,
Thank you for sharing your story. Great news to hear that your mini maze had such successful results for you. You may want to post your story at forum.stopafib.org to share your insight with others, and you may also learn a lot from others who have already shared their experience.
For more information on afib and afib management, we have many resources available to you.
• News Stories on afib http://www.stopafib.org/news.cfm
• Patient Resources at MyAfibExperience.org
• Video Presentations from the 2015 Atrial Fibrillation Patient Event
I had AV node ablation and pacemaker, I still have 30 beats per minute, I am more miserable since having it done than before, I have lost any quality of life I had. If I have my time back I would have said no to this procedure, my heart was always a bit faster before and AFib once a month maybe, now I have it all the time always get light headed with waves of something that go to my head. My chest is weak and have very little energy, I had lots of energy before this surgery. I have shortness of breath something I knew nothing about before. Now the Dr who did it is rude, uncaring, and can’t do a thing for me. I feel like I may as well be dead.
Hi, Millie,
Thank you for sharing your story. We are sorry to hear your experience with your procedure hasn’t improved your quality of life. You may be interested in joining our patient discussion forum to connect with other patients who collectively have a great amount of knowledge and experience. You may want to post your story there, and you may also learn a lot from others who have already shared their experience.
Wishing you sinus rhythm,
Melissa
Millie, has your doc adjusted your pm? The doc or the clinic can set the heart rate from say, 60 to 100 and you will feel so much better. Does the doc say there is any other reason it is so slow?
Hi Melanie,
Thank you for this blog and providing such an informative forum to discuss AFIB and AV node ablation.
My father, 87, has been recommended AV node ablation since he has been in AFIB @ 120bpm HR for the past 8 weeks. He already has a dual chamber pacemaker that’s worked well for the past 3 years.
Do you still recommend avoiding AV node ablation as per your 2008 article here….or has the technology and usage improved over time that a pacemaker/defibrillator + AV node ablation is now reasonably safe for patients with permanent/persistent AFIB?
Best regards,
Kamalesh.
Hi Kamalesh,
Thank you for sharing your story. We are so glad that you have found the blog helpful in your journey. You may be interested in joining our patient discussion forum (http://forum.stopafib.org/index.php) to connect with other patients. You may want to post your story and questions there, and you may also learn a lot from others who have already shared their experience. You can view a how-to video here: http://getinrhythm.com/how-to-register-on-forum.
Wishing you sinus rhythm.
Do the ablation….had it done this year 2016..Afib not gone but has helped tremendously. Would do it again
so you suggest that people remain miserable having more bad days than good. I guess you have never suffered from uncontrollable AF. My husband had the AV node ablation done a few years ago which my dear one has improved his life and there are no words that can explain how much that means to us both. he now has far more better days than bad…so if you have not gone through this yourself how can you tell people not to do it.
Hi Kathy,
Thank you for sharing your story and we are glad to hear that your husband is doing well and has such an improved quality of life. You may be interested in joining our patient discussion forum at forum.stopafib.org. You may want to post your story there, and you may also learn a lot from others who have already shared their experience.
There is a lot of cold comfort on this site for those of us who already have a pacemaker and AV node ablation. Firstly let anyone who has any form of AF understand, anti coagulation treatment for as long as you have AF is vital each day, and not any form of aspirin etc can replace Warfarin, Pradaxa, Coumadin etc. If you have AF and are unprotected by any of these type drugs, then you must insist on this.
Secondly, AV node ablation and pacemaker does not cure AF, but just lessens symptoms to hopefully, non awareness. Therefore, continuation of anti coagulation must be maintained daily for the rest of your life, whether you experience any AF symptoms or not following the AV ablation.
The outcome of the procedure is obviously very variable from all the comments here. Some of us had no option but to try the last resort following many failed ablations, shocks etc. A lot of us have had a good outcome and I agree that those people rarely post, only those with ongoing problems.
I can only speak of my own experience which is one of the better outcomes, in that apart from one episode when they fiddled with the pacemaker settings and then denied it and I again experienced AF symptoms, I have had almost two years of forgetting the whole thing. I take my Pradaxa twice a day and visit the Pacing Clinic once a year now.
The risks are of course, uncontrolled bleeding from a major trauma on Pradaxa (which is not the case with Warfarin) but I weigh it against all those jabs and dietary restrictions. I get a chest pain if I exert myself too much or go up steps, but I am now 73 and am active and now happy, putting all the waiting rooms etc behind me. I agree it is a drastic procedure but to me was worth it, but I sympathise with those who have had and are enduring a different outcome.
My husband had a single ablation following six years of permanent AF. This was a year ago and he continues in sinus to this day – some have all the luck!
I agree 100%. I had highly symptomatic afibs for 20 years. In one year I was cardioverted by shock 12 times. Took all kinds of drugs with horrible side effects. Finally my doc recommended complete ablation with pacemaker. It changed my life. Cut my meds in half and never felt better. Coumadin has never been a problem. What dietary restrictions?–spinach and broccoli? Big deal! I am a young 73 and have returned to work by choice.
Hi Mike,
Thank you for sharing your story concerning your afib and your positive outcome with an ablation. Please feel free to share your story at forum.stopafib.org to help others who might be struggling with a similar decision.
sorry about the typos above no way to delete…it my husband had his AV ablation done many years ago… It saved his life… He was miserable he had more bad days than good…he couldn’t walk very far and was always out of breathe…I was watching the life being drained out him …They went in and weren’t able to do nothing but freeze the AV node …wasn’t long after he was back to the gym bowling twice a week and smiling and laughing again. yea he still feels the Afib from time to tome but it is way less than it was. he knows he is still at rick for a strike or a heart attack…and I once asked him if he would do it again…his answer was in a heart beat..because if he had to of dealt with the AFIb these past years he would of rather of been dead…now he is happy and living his life…he said he would take quality over quantity any day…he is gong to be 68 in Sept…so everyone needs to decide for themselves .and you my dear shouldn’t be telling them otherwise,,,
as you can see i am really bad at typing but just want to let people know that there is always hope and to research and to do what is best for them
Thank you so much for sharing, Kathy. That is great advice.
I had An AV ablation 5 years ago at 78 years old. I had a pacemaker about 6 years before. I was so miserable from AFib I spent many days in bed…afraid to go anywhere & did almost nothing at all. The procedure only took about an hour & all went well. However ?Imcoukd still feel the Palps for over a month after procedure which is unusual. Now forbthemoast 5 years I have not had a bad episode although occasionally feel some Palps in early a.m while still in bed. I saw my electrophysiologist 2 weeks ago & he said I M now in AFib 95% of the time. How could this be when ?I can walk alone wit cane several blocks to restsurant & not feel tired? I was unable t get answer as electo was overbooked & I was tired after waiting over an hour. He left before it reall penetrated. Now last week ?I had a bad AFib episode…no Palps but come ple exhaustion & very weak for half the day. Is this to,be expected once one is in 95% of ti so many unanswered questions…M I to expect more od these episodes & do AV ablations just last about 5 years. It did give me a quality of life I did not have for over 10 years so YES I would recommend this ablation. Excuse poor typing…very nervous etc.
Hi Joanna,
Thank you for sharing your concerns regarding your afib and your history with an ablation and new issues that have come up. We understand that you might be very anxious and nervous about your health. You may be interested in joining our patient discussion forum (http://forum.stopafib.org/index.php) to connect with other patients and learn from others who have already shared their experience. I hope that you are able to find others to connect with there that can give you advice, suggestions, and hope.
Well hell im 40 year old male, and I already have a Pacemaker I got in April 21-2015 and now I’m have problems and need to ablation, and I’m very scared, that my dr mention 1 out 4000 people due from it, so I’m kinda scared, what do you think ..
Has anyone had the ablation and their battery changed as well in the same day?
Sat, May14,2016. 0159
Will be having AV Nodal Monday @ 1330.in Seattle. I chose this — though the Cardiac Surgeon decently said he would try another ablation (Dec 2015 was 1st). Am aged 69 3/4. So have had good innings already.
Worst info given me: though very unlikely, if pacemaker goes wonky, I will die as — how AV Nodal goes, so go I. But as my Pacer implanted Aug 2015,and all is well, it will continue to so be.
THANKS FOR LISTENING, MICHAEL
Hi Michael,
I am 79 years old and have had ongoing PAF for 20 years now along with drug intolerance. I am considering the AV ablation and I already have a 2 lead pacemaker so would love to learn from you how you are now getting on after your AV ablation.
Regards
James
Had AV NODE ablation about 10 mo ago have not had any problems thus far
I had the ablation in June of this year and still have afib but 80 percent better. Still have episodes but last only minutes and my v heart rate does not get over 150
I replied previously that I M happy to have had AV node ablation….now I feel differently. I M in AFib 100% of time which I understand 50% of patients are afterwards. Now I badly need Catarract surgery. One eye has lost most of vision & other eye the Catarract is getting worse. Does AV ablation worsen catarracts or med? I Have been on Dultuazem for over 5 years. My EP didn’t mention strong possibility of 100% AFib within 5 or 6 years. Nor Catarract problem. I will talk to my ophamologist & see if he will do the surgery with pacemaker & AV ablation. Disappointed & advise against this AV node ablation unless you are at least 70 years old & last hope.
Hi Joanne,
Thank you for sharing your afib story and your thoughts on ablation. You may be interested in joining our patient discussion forum (http://forum.stopafib.org/index.php) to connect with other patients who collectively have a great amount of knowledge and experience. You may want to post your story and questions there, and you may also learn a lot from others who have already shared their experience. I hope that you are able to find others to connect with there that can give you advice, suggestions, and hope. There are many resources on living with afib that you might find helpful.
Thanks again for contributing!
I am a 55 year old Heart patient, I have CHF, Cardialmyopathy, along with A-Fib and A-flutter. I have had an ICD implant since 2013. My Doctor has me on many meds. Doctor is suggesting AV node ablation, and I am unsure what to do! Not Feeling to positive after all these reviews! What to do, I am already disabled.
Hi Daniel,
Thank you for sharing your afib story and your concerns regarding how to proceed with your afib management.
You may be interested in joining our patient discussion forum (http://forum.stopafib.org/index.php) to connect with other patients who collectively have a great amount of knowledge and experience. You’ll need to join to see and participate in the discussion. To do so, go to forum.stopafib.org, and click on the big red button that says, “Sign Up”. Once you sign up by registering your email address, your preferred username, and a password, you’ll receive an email to confirm your interest in joining the forum. Click on the confirmation link in that email, and you are ready to go. You’ll be able to log into the forum, read the discussions, and participate.
I hope that you are able to find others to connect with there that can give you advice, suggestions, and hope.
I had a Pacemaker fitted back in January of this year, but I am still experiencing AF. My Cardiologist is suggesting that I have an AV node ablation And biventricular pacemaker. Should I have this operation?
Hi Joe,
Thank you for sharing your question about whether you should have an AV node ablation. It is a major decision and you should feel confident and knowledgeable on what path you decide to pursue.
You may be interested in joining our patient discussion forum (http://forum.stopafib.org/index.php) to connect with other patients who collectively have a great amount of knowledge and experience.
Best of luck to you! We wish you sinus rhythm.
I am a male, now age 73 …… I would like to share my experiences with AFib, AV Node Ablation, etc., in the hopes it might be helpful and encouraging to a fellow pilgrim suffering with AF …. my journey with AFib began at age 33 (1976) with a diagnosis of “Tachycardia” (an intermittent, occasional “pause/double heart beat”) that began to increase in frequency over the next (3) years …… during the next (10) years, I began experiencing increasingly frequent AFib episodes resulting in innumerable trips to the ER with “Cardizem / Procanimide drips”, new drug therapies, etc. – all to no avail ……. my diagnosis of “lone atrial fib / increasing paroxysmal AF” …. then became a diagnosis of “persistent AF” with increasing intensity and greater frequency of episodes – also accompanied by fainting spells ……. which continued over the next (7) years with no improvements achieved using drug therapies, including several “drug trials” (I tried every drug known/available up to 1996) ….. and, I was becoming fully disabled! ….. so in 1997, I then applied for an “experimental procedure” (at the time) “High-Frequency Radio Catheter Ablation” …. which also failed …. and so, after scores of drug treatments, drug trials at UT Southwest Medical School, untold number of physicians and hospitalizations, etc., et al ….. in (1998, age 55) we all agreed that my only recourse remaining was to undergo a “full AV Nodal Ablation with Pacemaker” at Baylor Hospital (Dallas) ….. there would be “no looking back”! ….. however, I’m so very thankful that I did! ….. my condition immediately improved and I began to slowly resume my lost lifestyle of golf, travel, outdoor sports, and a renewed career ……. amazingly, my heart was just tested and my ejection/fraction has improved over time from approx. 35 to 45! ….. I am now approaching the time for replacement of my third pacemaker ….. and yes, I understand I am totally “PM-dependent’ and I take Coumadin regularly ……… but still, I eagerly look forward to continuing the life adventures that await me in my “70s” …… and enjoying the gift of life this medical procedure made possible for me! ….. may God bless you all! …..
Hi Mr. Cornwell,
Thank you for sharing your positive experience with your AV node ablation. You may be interested in joining our patient discussion forum (http://forum.stopafib.org/index.php) to connect with other patients and post your story and experience there, and you may also learn a lot from others who have already shared their experience.
Thank you again for sharing, and we are so glad you are happily living and enjoying your life!
I’m so happy I found some one doing ok with a av ablation and pacemaker I’m not sure what year this blog was written it is 2017 now if you still blogging send me a email
I am a 61 year old lady and have had paroxysmal atrial fibrillation for 16 years. I used to have atrial flutter also, but that was cured with my first catheter oblation in 2008. In 2011 I had a pacemaker implanted, to help encourage the heart to beat normally, however it made little or no difference to the Afib. In 2015 I had a second catheter ablation, which didn’t help at all. I was starting to have side affects from all the medications I was on and really didn’t think they were doing any good, so in 2016 my consultant decided to do an AV node ablation as he said although it would not cure the Afib, I would no longer feel it and as long as I kept taking the anticoagulants I was not in danger of having a stroke. I went ahead with the AV node ablation, but it hasn’t stopped me feeling the Afib. When I get an episode now, the feeling I get is like when you are frightened or nervous, It’s hard to describe exactly, but if you have ever had that awful feeling of trepidation when it manifests itself physically, that is how I feel for the length of the episode, which can be 36 hours or more. There is nothing more that can be done because I have had the AV node ablation. If I had known how I would feel now, I would not have gone ahead with the AV node ablation.
Hi Anne,
Thank you for sharing what you have done to try to ease your afib. It is unfortunate that you have had negative ramifications after your AV node ablation.
For more information on afib and afib management, we have many resources available to you.
• News Stories on afib http://www.stopafib.org/news.cfm
• Patient Resources at MyAfibExperience.org
Please also join and participate in our forum at forum.stopafib.org, where you might be able to gain valuable insight from others who might have experience similar stories.
I have had irregular heartbeat off and on for about 10 years. The first time electro version was used and it lasted about three years. The second time electro version was used it lasted about a year. The third time the conversion did not work and I woke up still suffering from the out of rhythm condition. Then full heart ablation was recommended and performed. I was under for about six hours, and really the effects of the surgery were harder than the ablation. The bruising was intense, the catheter was a nuisance, for 24 hours, and the incisions hurt for several weeks, There were three incisions one in my neck. I hate hospitals and it is a joke to me that they expect you to rest in Grand Central Station. it took several weeks to feel good, I was still run down but the doctor explained that since many nerves were ablated that parts of my heart were not functioning as normal and it would get better. It did for about 11 months. Them I woke up one day out of rhythm ( not literally one day but over a period I started feeling run down, no energy, no reserve, no stamina. Now the same doctor is recommending a pace maker with an AV node ablation, Together, same day. He said the pace maker can’t correct and maintain the hearts rhythm without disconnecting the false signals coming from the upper heart. He makes the procedure sound very simple, by today’s standards, local anesthesia, minimal invasion, slight risk of side effects or trouble ( he mentioned only infection ) but it sounds to simple and NO catheter. I am troubled that it sounds too simple but it is certainly too final, too absolute, I know I can’t live anywhere close to a normal life as is. I have no energy. no reserve, nothing long term. The slightest activities like a shower and getting dressed and especially putting on socks and shoes and I am drained, huffing like a freight train and ready to lay down I take, or want to take a lot of naps. BTW I do wear a C-PAP, always, never miss not even for a short nap. I would not even think of not putting it on when I lay down. So what should I do? AS far as I know it is the ONLY option on the table, but one that scares me.
Thanks.
Hi David,
Thank you for sharing your afib story and your past experience. We know the options can seem overwhelming and it is a big decision on how you want to proceed. You may be interested in joining our patient discussion forum (http://forum.stopafib.org/index.php) to connect with other patients who collectively have a great amount of knowledge and experience. You may want to post your story and experience there, and you may also learn a lot from others who have already shared their experience.
Please see my answer to Norman’s post above for additional resources on our website that could help you.
Good luck! We wish you sinus rhythm.
I’m a 79 year old Scottish male living in South Africa and have suffered from A/F probably for at least 10 years but my GP at that time missed it. I’ve had shock treatment twice, the second attempt lasted about 6 months then the A/F returned. As none of the drugs appeared the be successful (I’m also lactose intolertant and suffer from COPD thanks to my doctors as accuhalers contain Lactose based power which they never knew about or checked),
My new Cardiologist suggested a Pacemaker with the option of an AV node ablation. As a retired Engineer I tend not to fully trust devices from which there is no return. Currently I’m on Adco Zildem + warfarin. My lower legs and feet swell due to this drug and so a “water tablet” was tried but that lowered my blood pressure so much that I took dizzy turns. I’ve now been given the alternative by my Cardiologist have the AV node Ablation, or put up with the dramatic swelling of my lower legs and feet which limits my exercise capability to help my lungs cope with the COPD.
What is the answer????
Hi Norman,
Thank you for sharing your afib story and what you have done so far to manage your afib. We don’t know much about what treatments are available to you in South Africa. Here in the US, age 80 is typically the cut-off for catheter ablation and often for afib surgery (maze and mini-maze), too. It may be that those options are not available to you, and thus may be that the AV node ablation is your best option now. You may be interested in joining our patient discussion forum (http://forum.stopafib.org/index.php) to connect with other patients who collectively have a great amount of knowledge and experience. You may want to post your story and experience there, and you may also learn a lot from others who have already shared their experience.
You’ll need to join to see and participate in the discussion. To do so, go to forum.stopafib.org, and click on the big red button that says, “Sign Up”. Once you sign up by registering your email address, your preferred username, and a password, you’ll receive an email to confirm your interest in joining the forum. Click on the confirmation link in that email, and you are ready to go. You’ll be able to log into the forum, read the discussions, and participate. I hope that you are able to find others to connect with there that can give you advice, suggestions, and hope.
You can view a how-to video here: http://getinrhythm.com/how-to-register-on-forum
There are many resources on living with afib that you might find helpful. For more information on afib and afib management, we have many resources available to you.
• News Stories on afib http://www.stopafib.org/news.cfm
• Patient Resources at MyAfibExperience.org
• Afib Blog
• Video Presentations from the 2015 Atrial Fibrillation Patient Event
Best of luck to you! We wish you sinus rhythm.
Is this site still open
Yes, Patricia, it is. How can I help you?
I agree with a few others here. Please be more sensitive about what you post or make it clear which sort of cases you are talking about. I have tried EVERYTHING. I have tried every medication out there including tikosyn, sotolol, cardizem, flecainide, amidarone, propofol, metoprolol… I have tried maze and numerous regular ablations. I still go into aflutter with a heart rate of over 200 and do not convert on my own. Additionally I have SSS, vavular disease, and an enlarged atrium with lots of scar tissue. So the recommendation now is AV node ablation. If you have a better solution I’d love to hear it. Otherwise it is appreciate if you don’t completely flip out people already worried and going through something so serious. It’s irresponsible to do so.
Hi Ann,
I am sorry that you aren’t finding this blog beneficial to you. If you might find it more helpful, you may be interested in joining our patient discussion forum (http://forum.stopafib.org/index.php) to connect with other patients who collectively have a great amount of knowledge and experience. To do so, go to forum.stopafib.org, and click on the big red button that says, “Sign Up”. Once you sign up by registering your email address, your preferred username, and a password, you’ll receive an email to confirm your interest in joining the forum. Click on the confirmation link in that email, and you are ready to go. I sincerely hope that this will help you further. Please let me know how else I can help or what else we can do. Thank you.
It’s definitely not for everyone. If you’ve tried everything else medication wise and your Dr is saying the best thing now is a/v node ablation because that’s it then maybe you should do it. It’s final though and it’s not the end of the world. It most likely will help you. In my case I was suffering from a fib for 20 years and tried most medications that you had. I was told the ablation would work the best and I needed it done. Before I went in to have it done I didn’t feel that bad. After the procedure and now a year later I’m still suffering from shortness of breath. That’s worse than anything else I had with it before. Just be well informed before you do it. Ask every question you can. Shortness of breath is something I had but not to the point or extreme that I had before. I myself wish I wouldn’t have had it done. Again just ask the questions and be well informed! It’s final. Good luck!
How are you doing?? My husbands’ Dr. wants him to have the AV node ablation. Has had AFib since about 2007. He is experiencing no symptoms and not short of breath but in the last several months his efficiency numbers have gone from 93 to 90 then most recently 86. This is over the last nine months. He has a home monitor with his ICD and they get readings how the device is working periodically. The Dr. feels it will continue to decrease and they want the number to be as close to 100 percent as possible. Dr. wants to do procedure before problems start!! We are skeptical. Husband has an ICD with pacemaker but I believe pacemaker is not used at this time. Cardioversion attempts were not real successful. Husband does take warfarin, digoxin, dialitazem, metoprolol. Dr. feels if he has procedure they may be able to take him off some of the meds he has been taking at pretty high doses. At this point we are dealing with some back problems that have come up recently and have not scheduled ablation. Would love to hear from you or other patients or another Doctor about the procedure and if we should do this before problems arise?? Husband works, feels fine, (except the back which may be a disc) . Interested to hear from others. Please respond!!!
Hi Roxanne,
Thank you for sharing your husband’s afib story and what his doctor advises. For more patient feedback, suggestions, and advice, you may be interested in joining our patient discussion forum (http://forum.stopafib.org/index.php) to connect with other patients who collectively have a great amount of knowledge and experience. You may want to post your story and questions there, and you may also learn a lot from others who have already shared their experience.
You’ll need to join to see and participate in the discussion. To do so, go to forum.stopafib.org, and click on the big red button that says, “Sign Up”. Once you sign up by registering your email address, your preferred username, and a password, you’ll receive an email to confirm your interest in joining the forum. Click on the confirmation link in that email, and you are ready to go. You’ll be able to log into the forum, read the discussions, and participate. I hope that you are able to find others to connect with there that can give you advice, suggestions, and hope.
You can find additional instructions here: https://www.stopafib.org/newsitem.cfm/NEWSID/623
We wish you and your husband the best of luck and sinus rhythm to him soon!
Hi Ann,
I’ve had AF for 11 years, though had few problems for six years after the first cardio-version. In 2014 I had another round of AF, then had cardiac bypass surgery. Since I had a history of AF, they convinced me to have the left atrial appendage stapled and the MAZE procedure at the same time. After, I developed atypical atrial flutter (I’m convinced it was caused by the MAZE procedure). I’ve had two cardio-versions and three ablations (the last two with cardio-versions to stop the AFL) over the last eighteen months. The last one was in January and I was in sinus rhythm for less than three weeks, after. I’d gone through pretty much the list of medications you have but they (particularly Sotolol) were depressing my heart rate dangerously. I also began having cardiac pauses (5-8 seconds) and nearly lost consciousness a couple of times. For almost all of the last year, I’ve been feeling miserable and would fall asleep at my desk at work. A month ago I had the AV ablation and a CRT-P pacemaker implanted. It took a couple of weeks to recover but I feel great now. I think it even surprised my EP, Nothing else worked so the AV ablation really was the last option. It’s early yet but I think it’s worked out for me. As I said, it’s been a month now and I’m back to walking about 15 miles a day.
I’m not saying that AV ablation is something to look forward to and I certainly had a lot of reservations (my EP advised me that he didn’t think the last ablation was going to work but it was worth a try before committing to AV ablation). It does seem to have helped me.
Hi Keith,
Thanks so much for sharing your experience with Ann. I think a lot of other patients might find your insight helpful. Have you shared on our forum, located at http://forum.stopafib.org/? You might be able to help some people out with similar issues they might be going through as well.
Thanks again!
I had an ASD (Atrial Septal Device closure in 2007. I am a 58 year old woman who was mis diagnosed and told I had a Mitral Valve problem in my 20’s. A very good doctor asked me to have an Echo test and it showed I had a very large hole in my heart. I was put on beta blockers after my closure. I take 81mg of Sotalol twice a day, a baby aspirin and Clonazepam 0.5 mg as needed for anxiety. I have experienced very minimal episodes of fast heart beat since the closure.This year 2017 I experience 3 to 4 episodes and ended up in the ER so now my Electrophysiologist wants me to have a heart Ablasion. He told me my success rate for this procedure is 80 to 90 percent this can be fixed.
I am concerned with my device in my heart but he said he has done this before. I am scheduled in Dec. this year for the procedure and I hope I am making the right decision to have this done. I know every one is different and has their own story so thanks for letting me share mine.
Hi Karen,
Thanks so much for sharing your afib story. We understand your concerns about your upcoming surgery. You might find it helpful to connect with some other patients who have undergone the same procedure and have similar experiences as you. Please visit http://forum.stopafib.org/index.php to sign up and participate in our patient forum, where you can talk with others, share your story, and learn valuable things as well. Best of luck to you!
My husband has had a fib for 13 years, has had multiple cardio versions over the years, ablutions, etc. but now at age 72, he has cardiomegaly, he is on hemodialysis, cannot be converted for more than 2 weeks, and his lungs fill quickly and perfuses poorly when in a fib. Is there anyone out there who has had the procedure and has had positive results?
Hi there,
If you see my answer below to Frank, posting your question on our forum will likely provide many answers for you from your fellow patients. Please visit http://forum.stopafib.org/index.php to sign up and participate, where you can talk with others, share your story, and learn valuable things as well.
I had a AV Node ablassion last March , so It has been a year. I don’t have the pounding in my chest anymore. I am on a blood thinner and high blood pressure pill. The problem is I still have shortness of breath, I have had fluid in my lungs 3 times I have it as I write this. On the whole I’m glad I had it done but, I don’t lie the fluid on my lungs it see to get wore every time I get t. I have had a pace maker since 2012, I get t checked every six months. I find when I fly
, is when I have gotten the fluid the first two times. I’m wondering if flying affects anyone else with this condition. I would like to fly to Europe this sprin but I’m afraid to Fly incase this happens again.
I still don’t have a lot of energy either. I worry heat my PAC marker stops do I die if I’m a ways from the hospital.
F
Hi Sharon,
Thank you for sharing your afib story. I’m sorry you are having issues with fluid in your lungs. To connect with other people who might have this condition, I would suggest joining our patient forum. It is located at http://forum.stopafib.org/. There you can connect with other patients who collectively have a great amount of knowledge and experience. You may want to post your story and questions there, and you may also learn a lot from others who have already shared their experience.
You’ll need to join to see and participate in the discussion. To do so, go to forum.stopafib.org, and click on the big red button that says, “Sign Up”. Once you sign up by registering your email address, your preferred username, and a password, you’ll receive an email to confirm your interest in joining the forum. Click on the confirmation link in that email, and you are ready to go. You’ll be able to log into the forum, read the discussions, and participate. I hope that you are able to find others to connect with there that can give you advice, suggestions, and hope.
You can find additional instructions here: https://www.stopafib.org/newsitem.cfm/NEWSID/623
We wish you sinus rhythm.
My grandmother is 88 years old ended up with AFIB 3 years ago 2/15 in Colombia, SA. I started her here in NJ with a cardiologist 11/15 she has been on a blood thinner and 2 HBP meds and cholesterol med. 2/18 when we went to cardiologist regular 3 month check. Changes in her BP, my grandmother had stopped taking her medications. We went through an EKG, Electrochardiagram, Holter monitor, Stress test and cardiac cathterization. A modified pacemaker is recommended not an ablation. Suggestions, she is healthy otherwise thank god and active
Hi Luz,
Please look at my reply to Pam below. For recommendations and suggestions concerning your grandmother’s afib and her condition, please look into joining our afib patient forum, located at http://forum.stopafib.org/. There you can talk with many other afib patients and get answers to your questions.
Good health wishes to your grandmother.
I am 64 and am booked to have an AV ablation next week. My Afib started in November 2016. Since then I have had 5 cardio versions, primary vein isolation and been on amerodion, bicor,nebilet, spirinolactin, lasex, digoxin and apixiban.I had the primary vein isolation in August 2017 and was feeling much better till in October when I was admitted with AF and a heart rate of 179. They gave me amerodion in a drip and followed that with tablets for several days, to no avail. I had another cardio version but my heart was a bit slow to come back and was on 28 bpm. There was some panic at the time and talk of a temporary pacemaker but in
the end I had a duel lead one put in and was advised by 2
cardiologist that an AV node ablation could be done at a later date. I have not felt great since the pacemaker as I’m in permanent af, they put me in the digoxin and the nebilet but they haven’t worked and when they increased the nebilet I could hardly drag myself around, had no appetite and couldn’t sleep. As I told my doctor I don’t want to climb any mountains, I just want to lead a normal life without being breathless and having to sit down after the slightest exertion.My last pacemaker check yesterday and my hearts around 150 when I’m active.After all of this I feel the AV node ablation is my only chance of having a normal life, after reading all these comments I realise it’s a gamble but at the moment the prospect of feeling like I do now for whatever time I have left isn’t a good option.
Hi Jennifer,
AV node ablation will leave you in afib all the time, and you will probably still feel it. You will be paced by the pacemaker 100% of the time, meaning that you will go through several pacemakers over the years.
What about surgery (Maze or mini maze)? There is info about them at https://www.stopafib.org/cured.cfm
You may be interested in joining our patient discussion forum (http://forum.stopafib.org/index.php) to connect with other patients who collectively have a great amount of knowledge and experience. You may want to post your story and questions there, and you may also learn a lot from others who have already shared their experience.
You’ll need to join to see and participate in the discussion. To do so, go to forum.stopafib.org, and click on the big red button that says, “Sign Up”. Once you sign up by registering your email address, your preferred username, and a password, you’ll receive an email to confirm your interest in joining the forum. Click on the confirmation link in that email, and you are ready to go. You’ll be able to log into the forum, read the discussions, and participate. I hope that you are able to find others to connect with there that can give you advice, suggestions, and hope.
You can find additional instructions here: StopAfib Discussion Forum: Step-by-Step Registration Directions
There are many resources on living with afib that you might find helpful.
My Mother age 63 is having AF and a single chamber Pace maker has been planted on her recently (before 40 days). She is on warferine, calan, lesex and nebix and doctor have recommended for AV node Ablation for coming sunday. After pacemaker she is suffering from SOB and can not walk around in her home without gasping. She also have minor leakage on right value and mild Mitral valve stenosis and has a procedure of ballooning 3 year ago. . Last pace maker reading showed average bps of 180 wth peak bps of 210.
As per doctor Av node ab ablation is likely to improve her condition. Need comment whether its worth a try.
Hi Raheel,
I hope that your mother finds some relief soon. I would definitely recommend posting your question on our patient forum to receive answers – please visit http://forum.stopafib.org/index.php.
You’ll need to join to see and participate in the discussion. To do so, go to forum.stopafib.org, and click on the big red button that says, “Sign Up”. Once you sign up by registering your email address, your preferred username, and a password, you’ll receive an email to confirm your interest in joining the forum. Click on the confirmation link in that email, and you are ready to go. You’ll be able to log into the forum, read the discussions, and participate. I hope that you are able to find others to connect with there that can give you advice, suggestions, and hope.
Is this site still active?
Hi Kevin,
Yes, it is. How can we help you out?
My 95 year old grandmother is scheduled for an AV node ablation tomorrow. She’s tried several medications to control her heart rate with no success. The doctors did not suggest an ablation. Why not try that before the permanency of the AV ablation?
Hi Michele,
Best wishes to your grandmother and I hope that her procedure goes well today. I would suggest joining our patient forum so that you can connect with others. It is located at http://forum.stopafib.org/. There you can talk with other patients who have a great amount of knowledge and experience. You may want to post your story and questions there, and you may also learn a lot from others who have already shared their experience.
You’ll need to join to see and participate in the discussion. To do so, go to forum.stopafib.org, and click on the big red button that says, “Sign Up”. Once you sign up by registering your email address, your preferred username, and a password, you’ll receive an email to confirm your interest in joining the forum. Click on the confirmation link in that email, and you are ready to go. You’ll be able to log into the forum, read the discussions, and participate. I hope that you are able to find others to connect with there that can give you advice, suggestions, and hope.
You can find additional instructions here: https://www.stopafib.org/newsitem.cfm/NEWSID/623
Good luck, and we wish you sinus rhythm!
Hello, I am new. I was searching to see if others still feel their AF after having 2 ablations, a 3 lead PM and sadly my AV node killed. My Dr also told me I would not feel it anymore. Boy was he ever wrong !!! I feel awful everyday 🙁
Hi Paula,
I’m so sorry that you are feeling awful every day! You should not have to feel this way. You might consider joining our patient forum so that you can connect with others. It is located at http://forum.stopafib.org/. There you can talk with other patients who have a great amount of knowledge and experience. You may want to post your story and questions there, and you may also learn a lot from others who have already shared their experience.
You’ll need to join to see and participate in the discussion. To do so, go to forum.stopafib.org, and click on the big red button that says, “Sign Up”. Once you sign up by registering your email address, your preferred username, and a password, you’ll receive an email to confirm your interest in joining the forum. Click on the confirmation link in that email, and you are ready to go. You’ll be able to log into the forum, read the discussions, and participate.
Please email us at [email protected] if you need any help or have more questions. Wishing you sinus rhythm!
Hi !! I have had AV Node ablation & still feel and struggle w/A-fib daily. My Dr told me I would not feel it anymore & didn’t believe that I do until I proved it to him.
Hi Paula,
It is very unfortunate that you still feel and struggle with your afib daily. That cannot be easy! You might consider joining our patient forum so that you can connect with others. It is located at http://forum.stopafib.org/. There you can talk with other patients who have a great amount of knowledge and experience. You may want to post your story and questions there, and you may also learn a lot from others who have already shared their experience.
Please email us at [email protected] if you need any help or have more questions.
Have a great day!
I had paroxysmal atrial fibrillation for 7 years and many hospital visits. I had 3 catheter ablations that were unsuccessful and as I was approaching 75 years of age I decided to have an AV node ablation and pacemaker implanted as a last resort. I feel so much better now, totally unaware of AF. It has given me my life back.
We are so glad that you found a solution that works for you!
DON’T DO IT!
My health is ruined! My Dr lied “No more atrial fib with av node ablation” I’m in atrial fib all the time, dummy me believed him! It has ruined my life. chest tightness can’t breathe, health getting worse day by day. I’m talking CHV I’m 68!
I’m hopeless
Hi Mary,
Thank you for sharing your afib story and your thoughts regarding AV node ablations. I am so sorry that you are having such a hard time. Please do not feel hopeless. You may be interested in joining our patient discussion forum (http://forum.stopafib.org/index.php) to connect with other patients who collectively have a great amount of knowledge and experience. You may want to post your story and questions there, and you may also learn a lot from others who have already shared their experience.
You’ll need to join to see and participate in the discussion. To do so, go to forum.stopafib.org, and click on the big red button that says, “Sign Up”. Once you sign up by registering your email address, your preferred username, and a password, you’ll receive an email to confirm your interest in joining the forum. Click on the confirmation link in that email, and you are ready to go. You’ll be able to log into the forum, read the discussions, and participate. I hope that you are able to find others to connect with there that can give you advice, suggestions, and hope.
Best of luck to you! We wish you sinus rhythm. Have hope. Let us know if we can help in any other way.
If you know of something that stops the A fib and freqent trips to the ER when all the meds available, singly or in combination, have failed, I’d love to know. I’m having the ablation next week and I’m looking forward to getting my life back after 2-1/4 years of not being able to do 99% of the things I enjoy. And not being bled of all my discretionary income for the ambulance fees and fees for ER visits and hospital stays.
Hi there D.G.,
Thank you for sharing. You may be interested in joining our patient discussion forum (http://forum.stopafib.org/index.php) to connect with other patients who collectively have a great amount of knowledge and experience. You may want to post your story and questions there, and you may also learn a lot from others who have already shared their experience.
You’ll need to join to see and participate in the discussion. To do so, go to forum.stopafib.org, and click on the big red button that says, “Sign Up”. Once you sign up by registering your email address, your preferred username, and a password, you’ll receive an email to confirm your interest in joining the forum. Click on the confirmation link in that email, and you are ready to go. You’ll be able to log into the forum, read the discussions, and participate. I hope that you are able to find others to connect with there that can give you advice, suggestions, and hope.
Best of luck to you! We wish you sinus rhythm. We hope your ablation next week goes well.
I’m 47 years old and since 2018 I’ve had 7 cardiac ablations and 5 cardioversions. I’ve been to UH Cleveland for 3 years and now I’m currently at Cleveland Clinic where I’ve had my last 2 ablations and cardioversions at. I just had 2 ablations within 2 weeks of each other. I’ve been on Flecainide, Tikosyn, Diltiazem, Metoprolol and now Multaq. Of course I’ve been on Eliquis for quite some time now. At first they thought it was Sarcoidosis but that was ruled out. I do however have a growing scar on my heart that they think may have been caused by some virus at sometime in my life. Which in 2017 I had the flu extremely bad which landed me in the hospital but they’re unsure when I may have got the scar. My doctors are very reluctant to do a AV Node ablation. I did tell him I’d do one more ablation but I can’t keep doing this either. I’m putting a lot of stress on my body doing ablations and increased risks from doing this over and over. I can’t financially, physically and mentally keep doing this. I want my life back! I’m afraid to even go on vacation or travel anywhere that’s over a 100 mile radius of my doctors. I know AV node ablation is permanent but I think I’m running out of options….
Hi Clark,
Please post your exact question in our Afib Discussion Forum at https://forum.stopafib.org so that we can ask a few more questions and share our thoughts.
My mother has had cardioversion after cardioversion, to no effect. She’s on higher than recommended doses of meds to help control afibs and slow down her heart rate, to know avail. None of it had worked. In fact it’s only gotten worse. Her heart rate is so fast, she can’t even talk, while sitting, without long pauses every couple of words to catch her breath. Her CHF specialist told her the heart rate in one chamber was 120 (with a ton of meds) but the other chamber was probably double that. She’s almost passing out at times when she tries to go to the bathroom or move for any reason.
All of the meds she’s on is effecting her kidneys now, and she’s close to needing dialysis.
This is about quality of life. At 73, she won’t make it much longer like this. My mom won’t live long enough to benefit from other medical advances like this. I wish this article had acknowledged that for people, this is the last option before death – and suffering death at that.
Today, she’s getting an av ablation and pacemaker. She can’t continue like she was so I’m glad she’s decided to try something.
Hi Michelle,
Thank you for sharing your mother’s afib story. I’m so sorry you and her are dealing with that. I hope the AV ablation and pacemaker helps improve her quality of life.
You may be interested in joining our patient discussion forum (http://forum.stopafib.org/index.php) to connect with other patients who collectively have a great amount of knowledge and experience. You may want to post your story and questions there, and you may also learn a lot from others who have already shared their experience.
You’ll need to join to see and participate in the discussion. To do so, go to forum.stopafib.org, and click on the big red button that says, “Sign Up”. Once you sign up by registering your email address, your preferred username, and a password, you’ll receive an email to confirm your interest in joining the forum. Click on the confirmation link in that email, and you are ready to go. You’ll be able to log into the forum, read the discussions, and participate. I hope that you are able to find others to connect with there that can give you advice, suggestions, and hope.
There are many resources on living with afib that you might find helpful.
For more information on afib and afib management, we have many resources available to you.
• News Stories on afib http://www.stopafib.org/news.cfm
• Patient Resources at MyAfibExperience.org
• StopAfib.org Library: If you already have an account, you can log in here: https://stopafib.knowledgelink.tv/ To create an account, go here: https://getinrhythm.com/stopafiblibrary/
• Please consider watching our 2023 patient conference recordings. Learn more at GetInRhythm.com.
Best of luck to you! We wish you sinus rhythm.
I am writing on behalf of a patient who was recently considered ineligible for a Wolf minimaze procedure. He has been going to the hospital every other month for atrial fibrillation for the last 19 months. His doctors have been imploring him to get an AV node ablation + PPM, but the thought scares the patient to death. He has even told me he will not go to a consultation with the EP who would do the procedure.
The three reasons given for the patient’s rejection for a minimaze were: (1) his laterocollis would make intubation with the dual-lumen catheter very difficult, and Dr. Wolf didn’t want to use a different intubation system; (2) the use of general anesthesia, which can exacerbate cognitive decline in the elderly; and (3) the need to walk around the room following surgery, as the patient suffers advanced Parkinson’s and ambulates mostly with his arms either with a walker or via furniture surfing. The patient is 85 years old.
So, recently, I came across an article that described an apparently novel anesthesia procedure that, if viable, would solve two of the patient’s problems. It is described here: https://academic.oup.com/europace/article/25/9/euad222/7226768.
I was wondering if anybody knew anything about this. I heard PFAs weren’t supposed to be approved for use in the United States for about a year, but might this work with a minimaze, and if it does, is there anybody out there brave enough to consider doing it on this patient?
This is really about the final straw before I throw in the towel and start trying to persuade the patient to kill his AV node.