Why Do So Many Choose Not to Have an Ablation?

Are there hard data to show how many have paroxysmal afib and yet refuse to have an ablation? It has been said by many, "you will know when the right time comes." Sure, when in afib, you feel ready to go for the procedure. Other times when in NSR, you wonder, is it worth the risk?
Therein the dilemma.

Lately, and I do not know why, my bouts which are now every 2 weeks or so (up from once month) are easier to tolerate even though they last about 3-4 days. Sometimes the only way I can tell is by taking my pulse and feeling that irregular cadence of beats. Maybe it is the taurine...I don't know. Also, I am on Coumadin and maybe that gives me some peace of mind, so to speak. If I am at the gym, sure, any decent exertion tells me I am not in NSR.

So many have had an ablation and are better off than before and yet others have horror stories to tell. Is it the way you feel while in afib that 'tells you" now is the time or is it, "hey, wouldn't it be great to be in NSR all the time and what the heck, go for it even though your afib symptoms are not really that bad?" I guess the reply is quite personal and always the 'risk' seems to be the one criterion most focus on especially if it 'ain't that bad really to endure this beast'.....I would love to hear from people who avoid the ablation just because of the fear of the procedure and rationalize their 'living with it.'

Ummm, Benj, i also am terrified of having some medico or other rummaging around inside my heart, but i am not living with afib at all. It seems worth it to me to take what others have described as radical dietary means to get rid of this scourge, and i have, with help from other afibbers here on Hans' excellent forum, done just that. I am not by any means the only one either. The List includes around 200 [a guess] others, starting with Fran and Erling. I sincerely hope you find this or other means to get rid of afib too. All the best to you.
PeggyM

Hi Benj:

You're so right, ablation is a very personal choice. I think that at some point we feel so destroyed by "the beast", that we would do anything, take any risk to be rid of it, and all the pathetic medical alternatives to ablation.

I only wish I had found this site before I jumped to ablation, although in hindsite, I don't know whether it would have made a difference in my choice to proceed. I honestly thought I was in the best hands and trusted blindly. Little did I know that an inexperienced fellow would be at the wheel without my knowledge or consent. At least for those here addressing that decision, they can read unbiased data like Hans ablation survey and those stories, good and bad which can help them to make the best possible choices. I only hope that my story serves to help others make wise and well calculated decisions. I was always amazed at Pete who had a tamponade and still went back and tried it again, albeit with a more experienced hand. His second try was successful, but I could never go back, as now I would face much, much more risk because of the residual health deficits caused by the first attempt. With the first attempt I was (aside from afib), a very healthy 49 year old. As a result of my ablation attempt I am a very unhealthy 54 year old, on coumadin for life with a prosthetic valve. I just rely on ways to minimize episodes and manage rate and have to live with it, and I HAVE found ways to lesson it's affect on my life. I would love someday to consider some little cosmetic surgery. I guess I'll just have to grow old naturally - wrinkles and all.
My experience has caused me great fear of doctors in general. Why, I wouldn't let one take a splinter out of my finger- live or die:~)

I think I am a little more subtle here than I was in 2003 or 2004, having seen many people tell their success stories, but have come to recognize that those uncomplicated procedures are done by those few most experienced hands.

Pam

From the FDA transcript of the panel device approval hearing.

"……DR. CALKINS: Al, I just have a couple of comments about where it would fit into the armamentaria of the electrophysiologist. I think it would have a very important role. Right now, in the absence of this catheter being available, people say that their one option is a pulmonary vein isolation. Anyone who is doing this procedure realizes there is a learning curve and the learning curve is very rocky as you go up on it and the complications are like no other procedure that's ever been done in an EP lab….
…So right now we have the electrophysiology community in a tough spot. They're hearing about pulmonary vein isolation. These articles are showing in circulation every week. They are getting pressure to do something for atrial fibrillation. All of a sudden they start doing it and the complications occur. We don't know where this procedure is going. It's evolving rapidly from periostial ablation to perianatomic ablation to different mapping techniques to different energy sources. That's very much of a moving target….... So where it fits in for a center like mine where we can do whatever we please, we'll tell the patients that they have an option. If they want to go for the home run, the cure, and they're willing to accept a procedure with higher risks that's in evolution and so forth, we're happy to go ahead and do a pulmonary vein isolation….. "

I guess I was just part of "THE LEARNING CURVE".

I want to say that there is really a delema to this decision. If you can wait, then some new research might bring to light true causes and much safer treatments. Any time you avoid invasive proceedures, you are probably better off.

But, at the same time, if you wait too long and then the heart becomes damaged, treatment to try and stop the process of damage and destruction by a-fib may be much more difficult and of course the longer you wait, the older you get and the less able you are to handle medical proceedures. Also, a-fib is progressive and I have not ever seen a case where it didn't just continue to get worse and worse.

I also think that a-fib affects people hugely differently. Some get severe incapacitating events, while others may not even be aware they are having it. So, if the person is having few symptoms, it really doesn't seem urgent to do anything.

I think everyone has an inner idea when the scale has tipped toward considering a surgical proceedure.

Tish

Tish - You should read Erling Waller's story in Hans first book. As I recall, he had it for 10 years and then fixed it himself with nutrients.

He says: (p. 177) "I am a 74-year-old-male enjoying excellent health, free of the afib that used to be my frequent and unwelcome companion. My afib career began about 10 years ago."

We haven't heard from him in a while, but I presume he is still enjoying life in NSR should be coming up on age 79 this spring.

Fran has a similar story - I believe her afib ran for 20 years. She's fine.

They were the inspiration to many of us who tried to find a cure besides ablation. Others found success as well and have been written up in Hans books or can be found on "The List."

The points you make are excellent about the pros and cons for proceeding with ablation.... I don't think every heart becomes damaged with time, although fibrosis can become an issue. Erling tackled that issue with nattokinase and fixed his shoulder injury at the same time.

While I'm not sorry I eventually gave in and had ablation, I am always a bit wistful in thinking maybe I could have also fixed it myself if I had given it a bit more time. However, because I was 67 at the time, I made the executive decision not to lose any more years waiting out afib events. The rest is history.

It still comes down to a personal decision and confidence in the EP or the ability to tough out the events and not suffer the consequences of what that stress does to the rest of the body. For me, the stress was too high and even now, I'm still working to unburden the damage done by stress.

Jackie

Benj,

I don't think its a case of "just living with it". I won't have an ablation YET as I have managed through diet changes and supplements to avoid any AF for almost 18 months. I am sure if I was still having my two or three episodes a week lasting anything up to 40hrs each I would be screaming for an ablation by now. I was always very badly affected by my AF and always felt its presence very severely to the point of having to lie down and do nothing. Its a very invasive procedure - some people are lucky and OK afterwards, others are not. At the moment I can see no reason to go down this road and possibly end up worse off than I am now. I think Tish is right that we will all know instinctively when the scale has tipped towards considering an ablation.

".... and I have not ever seen a case where it didn't just continue to get worse and worse. "

Tish, you think you might ever get to Maine? If so, please let me know. I am not trying to be rude or argumentative here, all respect to you and i love to read your posts, but come up here and you can see one fat old lame somebody who is getting better, not worse. It has been since dec. 2003 now, and if i am getting worse, i will gladly take some more of this kind of worse. My most sincere best wishes to you.

PeggyM

What a delightful post Peggy, and if I ever get to Maine, I will look forward to meeting "more of this kind of worse".

Pam

With apologies to the writer of the song i am about to bastardize:

I'm not goodlookin', nothing to see,
but not having afib is heaven to me!

Pam, you would be so welcome at my house.

PeggyM

Your a-fib seems to be progressively moving toward permanent a-fib. If you can't stop the progression, you should ignore your feelings and the advice of others who have been able to slow their a-fib progression, and move aggressively toward obtaining an ablation (only with a top ranked EP).

The latest forum, led by PC, might give you some guidance about what your chances of avoiding permanent a-fib are.

Permanent a-fib will almost certainly reduce your remaining years by half and degrade its quality. There is a reason for the relative absence of permanent a-fibbers on this web site. Fairly quickly, permanent a-fibbers lose interest in a-fib, because they have progressed to heart valve disease.

If you are progressing toward permanent a-fib, and you don't like the idea of an ablation, the other choice will likely eventually be sequential open heart operations to install, and subsequently replace, artificial valves.

Hi Will,

You said: "Permanent a-fib will almost certainly reduce your remaining years by half and degrade its quality."

I have a friend whose permenant afib was discovered when he was inducted into the army during WWII. He just celebrated his 85th birthday, afibbing the whole way. I know that he worked his whole life, and was over 65 when he retired. Hmmmm....

Pam

benj,

Interesting posts above. I had an ablation and I had a horror story to tell. My deciding factors were that I had maxed out on several antiarrhythmic meds, taking coumadin and was extremely symptomatic as episodes steadily increased. That's what made my decision for me, although I struggled with it as most do up until the last moment. I reached the point I knew it was time and did not want to live with this for the rest of my life. I was only 52.

Wow. Thanks everyone for the encouraging posts. Jackie, you are the first one to tell me of anyone that has managed not to get worse with time. That is really encouraging to me. Pam's story about the guy whose heart seemed to be alright will long standing a-fib was also encouraging. I've been reading up on this a couple of years now and was discouraged at not seeing any posts or stories of successes with non surgical methods.

Tish

So far, it seems those who chose an ablation (surely non-scientific study) did so because of the symptoms they endured. For me, the decision will not be made on that issue since it does not apply. What will tip the scale is the prognosis for vagal induced afib and whether some of the things Will posted will indeed happen. My search will continue.....

Tish, i would like you to hear about a lot of people who are not getting worse because they have stopped having afib, and i mean hear from these persons directly thru their own posts to this bb, not just thru somebody else telling you about them. These are people who have gotten rid of their afib episodes by means other than heart drugs or surgical procedures. Most, though not all, have used dietary and/or supplemental means to accomplish this.

To read posts from maybe 200 of these people, do a subject line only search [here on Hans' site] using the search term "The List". Be sure to uncheck all the checkboxes except the one in front of the word Subject. This present bb has only been open since around new year's day, so there are not many of these List posts in this one. When you get finished with this latest bb, go to the archived boards [via the blue button at the top marked Archived Bulletin Boards] and enter the same search term into each of them in turn. I think i started marking these posts for The List in 2004 sometime.

Each of these good people posted here with the intent to help others do as they have done. Most of them you can email directly by clicking on their blue lettered name at the top of their posts. Nearly all have described exactly what they did or stopped doing, and have given brand name, dosage, and timing of any supplements they took.

PeggyM

benj, I am fairly new on the bb, just since October 2005, but have absorbed everything I could read and decided to make the change in my diet and take supplements. I stopped my medication and I am proud to say that the last episode of afib that I had was in June 2006, nine months ago and counting. I had to muster up a lot of tenacity and make a lot of changes and truthfully I am still making changes because I believe that I have some underlying long term stress issues that changed the balance of my body over a period of years. I believe it may take a few years to get my body totally back in balance. I have learned so much about the body and now have the highest respect for this wonderful creation and when it is well oiled and has the proper nutrients, it purrs like a new car, when it doesn't it makes clanking noises.

It has been really hard at times, I have often failed, but I get back on my feet, forgive myself and try something else. I have followed a lot of those who have tried diet and supplements and they have been an inspiration to me. I have also followed those who have decided to get an ablation and have rejoiced at some who have had success and felt compassion for some whose ablation failed.

Will I ever have an ablation? I don't know. I know as long as I can keep afib in check with what I am currently doing, there will be no need. If I should start having constant afib, then I will turn my studies more toward the world of ablation. Until that time, I will keep searching for answers and sharing what I find. Sharon

Tish wrote:
. Also, a-fib is
> progressive and I have not ever seen a case where it didn't
> just continue to get worse and worse.


Oh Tish,
Please read The List story of my friend Sally.
She is, maybe only for the moment granted, cured of afib by diet and supplements and she is 70 at the end of this year and was in permanent afib for months.

Joyce

My decision to have an ablation was based on personal research. It was clinched after I had a discussion with a top flight EP. Given my particular case, he said I was a good candidate and had a high likelihood of a "cure." The risks for me were described as low.

Han's advice is best - once you decide, pick one of the top flight EP's to do it. That way you increase your chances for a sucess.

benj:

You can use the search function and go back some years to find an informal survey of permanent a-fibbers I conducted. Since my last survey report the last a-fibber who had not progressed into heart valve disease, who happened to have had asymptomatic permanent a-fib for 20 years, also experienced the sudden appearance of very serious valve leakage.

The plausible reason for the leakage is that progressive atrial physical changes, caused by a-fib, distorts the valve support structure which produces valve leakage.

(the title of the message describing the survey results probably contains the words "ongoing" and/or "survey", and "Wil Schuemann" will be the author)

Those of us permanent a-fibbers who have had successful ablations saw our valve leakage disease disappear within months.

You can also find recent medical articles which show that once leakage becomes "mild" the leakage will normally increase steadily, remaining life span will be halved, and the patient will normally require valve replacement/repair.

Information that one a-fibber didn't develop heart valve disease for decades does not disprove the rule that permanent a-fib usually progresses to heart valve disease, any more than an albino doe disproves the rule that a doe is usually tan colored.

Very interesting...my ECHO does show "mild mitral valve reurgitation"...

"ECHO demonstrates normal left vetricular size, well preserved left v. systolic function. EF 60%. There is 1 to 2+ mitral insufficiency. 1+ tricuspid insufficiency. Pulmonary pressure 38 which is slightly increased **. There us no evidence of pericardial effusuion.

** later tests showed sleep apnea and now using CPAP therapy. Pulmonary FT all were normal.

Wil, perhaps these issues are alredy underway and bears great thought on my part....thanks.

Interventricular septum: .64
Left v. posterior wall: .79
LA dimension: 3.89
Ejection Fraction: 60%

Is that the only echo you have? It is a good idea to follow up with a yearly echo to see if something is changing. To have a mild leakage in the valves is not uncommon and can be unrelated to your AF.

Hi Benj,

I made my decision to ablate based on what I went throught every day for several years before ablating. Actually, the worst of Afib started in the mid 80's and was able to control it for several years. Medications came and went, and then in 1998 I had my first pacemaker, my heart rate going to the 30's constantly when not in AFib and going up to 400 when in Afib. I then went to my first EP in 1998, after I had my pacemaker through my Cardiologist. Things began to get worse after that. In a 3 month period, I had over 400,000 PAC's along with unending AFib. This EP decided, since I had the Pacemaker already, and medicines were not helping much, I should have an AV Node Ablation. She thought that should help me enough to make it worthwhile. That too made me very uncomfortable, and seemed to make my AFib more constant, every day for almost the whole day, and most nights I would be sitting in a chair to try to sleep, with my heart going crazy. We tried antiarrythmic drug after anti arrythmic drug, and none worked. They all seemed to work for a time, but none lasted. And they made me feel 'sick'. Then came the over ride pacemaker that my Dr was offered for her worst patient, which was guess who. This was to be the sure answer for my AFib. So much so that I did not have to pay a penny. St. Jude donated the pacemaker to me after seeing my history. They wanted to prove to the Dr that it was a wonder for AFib patients. That was about early 2002, after being on Tikosyn for about a year. Oh my, was I ever in trouble. I had so many PAC's and so much AFib, I would sit there with the override trying to go faster than the AFib, and it was a horrible experience. They kept tweaking it, and I was in the hospital a lot, trying to get things under control. One time they shut down the override, and it made things worse. The rep was very frustrated with me, I was in AFib constantly with that override trying to go faster, and it was horrible. So he just shut it off. Well, shutting it off was even worse, and I was unable to do much of anything, lying in the hospital waiting for my Cardio. When he came in, he was shocked to see what was happening, and was so deeply touched by it, that he then decided, we had to do something further than what already has taken place. That was when he and I together began to search for answers. I was on O2 constantly, with horrible arrythmias constantly. I could barely function for hours at a time, and struggled to breathe and walk around and be out of bed. My fingers would turn a gray purple, and my skin had a gray look to it. many people were afraid I would not make it, including my GP, my Cardio and myself. First my Cardio found Dr Wharton, but insurance did not want me travelling. My semi local hospital with my EP, Shands, Gainesville, would not even attempt to do an ablation. I was too great of a risk. I went to Orlando to an EP who was doing Abaltions, and he said he could not do it. Then my Cardio told me about a Dr friend of his, who was having almost as much trouble as I was, and he was going to go to Cleveleand Clinic. Why don't we try for that. It must be good he said, if a Dr is going there to be treated. Of course my ins did not want me going out of state, but we were ready to fight. I went on line and found CC Florida, and Dr Pinski, only they did not accept my ins. My GP, Cardio and my wife called and called the ins co, and finally after all of them telling the ins, that I could die without the treatment, they allowed me one year at CC Florida. It was 2003, I think Feb, when I first saw Dr Pinski. He was very interested in my case, and wanted to help me. AFter a couple of visits, we talked about fine tuning my pacemaker, and shutting off the AFib override, because I was in heart failure, and he believed that was what was causing it. Almost immediately, I was able to breathe better, and gradually only used o2 at night. Still had a lot of AFIB, but it came and went. It could be gone as long as a week, or happen for 24 hours straight for several weeks. Finally we, Dr Pinski and myself decided that the ablation was the best thing to try. In Dec 2003 I had my ablation, and was in AFib throughout the proceedure on Friday 7:00 am, and that poor man worked and battled this monster for over 7 hours trying to help me. I remained in constant AFib until Sunday Afternoon, when it suddenly just stopped. Now I was able to go home, very weary and weak and worn out on Monday, and still had some Afib, but it never lasted as long as it was before. The Tikosyn also began to work better in conjunction with the ABlation, and I got less and less bouts of Afib. During that time Dr Pinski also sent me for a sleep Apnea test, and of course, I need a CPAP. I still use it, kinda don't like it, but I do use it. I have been AFib free for about a year and a half or a little more. It worked, and I feel it saved my life, and not the least, gave me my life back. That is why I chose to have an ablation. And I am so glad that I found Cleveland Clinic Florida and Dr Pinksi. I too had leaky valves, and the ablation changed that. Yes, it is an individual decision, and we must all come to the conclusion ourselves, as to whether we want to take the risks, which are minimal, although they sound big, when it is your life! It is a very personal decision, and I am glad that I made it. I pray for you Benji. I pray that you will find the right decision for you, and that you will be comfortable and sure in your decision, whatever it may be. I pray that you will find peace for your heart. These people here on this BB have great ideas, and are a comfort and a help, and will give you good advice. The decision must be yours.

God Bless you Benj.

Bob G Ocala

PS: The Magnesium is doing the trick with my PAC's. I have had none, -0-, NADA since starting to take 400 mg of Manesium Oxide. Thank you Lord, and thank you BB members who directed me to that as a possibility.

benj:

I went from no leakage to mild leakage in a short time which prompted me to arrange for an ablation. The echo taken a few months later showed leakage had increased further. The echo done just prior to the ablation showed a further leakage increase.

I'd recommend you aggressively make arrangements for an ablation. It will be months before the day arrives and you can always reevaluate and cancel if the leakage doesn't worsen. However, if you wait and then find the leakage has worsened, and then you start arranging for the ablation you will not be happy about your earlier procrastination.

The fact that non-afibbers with mild leakage are not as likely to see rapid further increases has no relevance to a-fibbers whose a-fib is commonly directly responsible for rapid increases in valve leakage.

Wil:

I am most appreciative for your comments along with the others. I now have an ablation date of April 11 with Dr. Pinski, Cleveland Clinic, Florida. This is not months but literally days. Right now, it is a 'go' but my decision is not because of any symptoms that debilitate me but what I might face down the road if I avoid the procedure.

I am quite perplexed right now and hope I can sort it out soon...I have to; and like so many before me....the question we all ask..."will I be better or worse after the procedure?" and that will not be known until it is performed.