How are folks doing 5+ years out from successful ablation?

Hi,

I'm new to the forum. Lots of great info, thank you! Question - I see a lot of posts in here by folks who have gotten ablations within the last 1-2 years, but not many who are:
1) now 5-10 years out from their ablation that got them Afib-free (I know it can take a couple sometimes)
2) still doing great

Is that because I'm not looking closely enough and need to dig more? Or, perhaps folks who are doing great after 2 years and so are no longer posting?

Just curious. This question is related to my other post about Natale's nurse now saying ablation is "no longer a cure" but the "best chance for a cure." I'm wondering if, now that we are 10-15 years out from the first ablations, if outcomes are getting worse over a longer time horizon and that's why the "cure" message is getting axed. Maybe folks who got Afib-free after their 2nd or 3rd ablation did really well for 5 years, but in the 5-10 or 15 year horizon, now they are finding that the ablations are working and more triggers have opened up.

Dr. Natale did say that folks who come back to him for a 2nd ablation are almost always for the Coronary Sinus or LAA. Regarding the LAA, if he ablated trigger spots within it, now he's finding that he has to isolate it. And then, of course, 65% of those with an isolated LAA have to be on long term blood thinners, unless they do something to block or remove the LAA (and those procedures obviously still in experimental stages).

I'm just wondering if "ablation" even with Natale is more of a "get Afib-free for 5-10 years" but then you're going to rejoin the ranks of Afibbers... The reason I ask is because I'm 33 (have had Afib/Aflutter for 11 years) and I'm just wondering if we have any kind of data for what a 20-30-40-50 year time horizon looks like after a successful ablation(s) that eliminates Afib.

Thank you!

Stephen

Stephen,

The ablation procedure for atrial fibrillation has only been done more or less routinely for less than 20 years so there certainly would be no data regarding long-term success for 30 or 40 years. You can find some data on 8-10 year success rates in our 2009 ablation/maze survey [afibbers.org].

Hans

Stephen

Now into my 11th year of sinus rhythm after ablation and touch-up in Bordeaux. When I asked about long term results my EP in London said 'You ARE the long term'.

The procedure didn't exist 20-30-40-50 years ago.

Gill

Gill - just curious about this...why are you still posting and coming to the board if you've been Afib free for so long? I would think you would find no need to come here after awhile...(not that we don't appreciate you being here, of course

btw...congratulations on such a lengthy NSR!

Barb

Barb - Gill is one of many "saints" who have found the cure AND a supplement regime to help them stay symptom free, and they find the time to keep coming back and helping out. I printed out Gills words from last September and have it on my desk with the title "Words of Hope" handwritten across the top, as I have struggled with this thing recently. I am so very grateful to everyone of them and hope I can in turn give words of encouragement to someone else 10 years from now..........

"why are you still posting and coming to the board if you've been Afib free for so long?"

Barb, do you feel friendly toward any of us here where you yourself have been posting for some years, i have not paid attention enough to the time passing to tell you how many? Are we real people to you, or just some letters that appear on your computer, no different than google or the NYTimes website? Would you miss us if you did not come here to read and post?

Myself i feel as though some people who post here are my personal friends, Gill among them, even though i have never seen them anywhere but on the computer screen. The only one of these people i have ever seen in person is George Newman,who passed thru maine while on vacation once a few years ago and we went to my favorite local restaurant for lunch. Of the rest, the only one whose voice i have even heard on the phone is Hans, who was kind enough to call me once to help solve my difficulty with the new forum format.

I would miss talking with this community if i did not return to this forum. Often i want to know what this group of friends thinks about one thing or another, or i just want to talk with them, to hear their familiar online "voices" . I do not think that even if my very rare afib episodes were to vanish without any trace, I would then stop reading the forum and posting here from time to time. At one time a few years ago, the afib did vanish for i think 3 years, maybe 4 years, i do not really remember. That was when i was a lot more conscientious with paleo diet than i am now. Lately i get maybe 3 afib episodes a year, so far all easily terminated with one ativan pill. Some people who have had ablations do not do any better than that, but it does not make me want to stop posting here.

PeggyM

Barb

I didn't find this board until after my ablation. I had done masses of research over about 2 years before deciding to go to Bordeaux - finding the board earlier would have saved me many hours of work.

I hang around for the reasons that Peggy mentions, but also because there are people here who have access to all the latest research publications and post links to them. If ever my AF were to recur I would want to know about the latest developments and techniques.

Gill

Gill, I don't know you as well since I'm new, but I already appreciate your sticking around!

We should note that asides from ablations, there are those that have experienced long term pharmacological NSR as well. I am 1.5 years in NSR on TIKOSYN and my EP loves the drug as he has "many patients" who have been on it for several years successfully. Having said that, I await the advancement of the state of the art and the reduction in size of my LA (I was under 50mm when first diagnosed but was dealing with a quack that had no business treating patients and grew to 60mm by the time I managed to get referred to Dr. Verma in Newmarket). At that point I will make a decision based on statistics as to whether or not I want ablation. Right now? I am quite happy on TIKOSYN (dofetilide) as it gives me 100% NSR (oh it feels good). I can exercise and move around without gasping for air (BTW my lungs are at 65% capacity due to H1N1 induced pneumonia and heroic life saving efforts in ICU as a result). I still have my days if I take on salt, but........ having said all of this, there are good reasons to stay with the drug NSR and wait I think.

I would love to see stats on both pharmacological NSR and ablation NSR and, in fact, there is a study being done right now on that very topic. Think it is called the CABANA study and I did not qualify for it as I have not been in aFib for 1.5 years while on TIKOSYN and they needed a sign of aFib within the past 6 months to qualify for the study. I was on a 24/7 recorder for almost a month and the only thing it picked up on was some skipped beats. No aFib, no PVC's, no PAC's... no nothing!

And now that I have gone from Paleo to the "Eat to Live" vegan diet... ALL IS CALM!

Waiting for the results of any of those studies. They will be of great interest to all of us I am sure.

Murray L

Murray L

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Tikosyn uptake Dec 2011 500ug b.i.d. NSR since!
Herein lies opinion, not professional advice, which all are well advised to seek.

Murray,

Several studies have been done comparing outcome and cost-effectiveness of ablation and drug therapy. You can find them here:

[www.afibbers.com]
[www.afibbers.com]
[www.afibbers.com]
[www.afibbers.com]
[www.afibbers.com]


Hans

Barb,

I'm one who found a way to keep my afib at bay through supplements (and occasionaly PIP flecainide when they failed).

This last year, I went through the stress of divorce. The increased stress led to significantly more afib than in the previous 8 years of my afib career. All this time, I've continued to read and post. The increase in afib this last year, at one point, had me considering scheduling an ablation, as I was using PIP flec nighty.

I decided to try flec in as a preventative. This worked and while I was titrating the flec down, Hans posted about ginger for vagal afibbers. I tried it and was able to titrate off the flec quickly. I continue on ginger, and while not a perfect record, it is pretty good and I'm in much better shape (afib wise) than before beginnning the preventative flec (4 afib epsiodes in 4 months vs. nightly). Also the PIP flec still works and converts me quickly.

Had I not continued my association with this forum, I might have never learned about ginger.

Peggy and Erling are the only two afibbers I've personally met, though I've talked to a number of others on the phone.

George

I don't post often but i visit the board every day to see how everybody is doing. Many times I have given advise to my wife or others by starting the sentence with Jackie or George or Hans (etc) said..... . They also know who Peggy and Erling and some of the others are. Sometimes i will have my wife read some of posts to get an idea what it is like to have af because I don't talk or complain about the condition I just do what I have to do. Also, like George, I pick up helpful tid bits that are either new or that I have forgotten. This board and all of the regular posters have become an important part of my AF and healthy lifestyle life. Although i have no reason to believe that I am going anywhere soon I told my wife to let all of you know if I suddenly croak. Dennis

@Stephen: The best way to see this anamoly of the heart is to see it as an anamoly of the body. When you factor in sympathetic/parasympathetic, vagus nerve, electrolite balance, gastronomical issues, stress, food triggers, etc., one can only conclude, and this includes brilliant scientists and doctors as well, that we'll probably never get a complete handle on this desease. One EP, with a PHD in his field, told me that it will take a breakthrough in the human genome before we cure afib and other heart arrhythmias. And that is probably decades away.
Being as young as you are with afib, I can only imagine the let down you feel. We all go through a grieving process, fear, anger, hopelessness, regarding this delapitating ailment, no matter our age. I'm 56, and not a day goes by that I don't ponder how my old age will be dancing with this devil called afib.
Bottom line: it could be worse.

"....ponder how my old age will be dancing with this devil called afib.... "

maybe a true cure is not available by nutritional means, altho Erling is apparently an exception to this "rule",but as most of us have gotten older we have found various means to decrease the frequency and severity of afib episodes. The really valuable thing about this forum is it makes any one person's experiences available to all of us so we can adapt techniques to our own lives and resources. I have gotten precious information here over the years that has enabled me to live a mostly afib free life. I wish the same for all of you.

PeggyM

"...I would love to see stats on both pharmacological NSR and ablation NSR ..."

So would i, Murray, and also i would like to see some stats on people like Erling, who has "cured" his afib by nutritional means, and myself, who am able to reduce occurrence of afib to maybe 3-4 afib events a year [one only during 2013 so far]. But i think we have as much chance to see that as to see pigs airborne on their own wings.

PeggyM

I am starting to believe that nutrition is a large factor in aFib control, at least in the beginning. Have just read Dr. Fuhrman's book "EAT TO LIVE" and have taken up his eating regimen. My God! My diabetes is under control within a week and I am reducing Metformin to prevent sugar lows; I am guessing that my BP, etc., are also coming into line. I am still supplementing and especially Potassium (3g+ daily). My heart is the calmest it has ever been; I have more energy than I have ever had; I do not have the constipation that I had on the Paleo like diet; you have got to read this book. It is available online for download. Do a google search. I have downloaded it and have purchased the hard copy version as well.

It is a must read IMHO.

Murray L

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Tikosyn uptake Dec 2011 500ug b.i.d. NSR since!
Herein lies opinion, not professional advice, which all are well advised to seek.

Ditto on Murry's recommendation of Dr. Furman's book "Eat To Live". I too have gone from more on the Paleo side to the Veggie, fruit, beans, nuts and little meat side of things. I have lost 40 lbs in about 1 year and have experimented with 'juicing' and juice fasts of up to 10 days. A great video that can be watched for free is "Fat, Sick and Nearly Dead'. It is a wonderful, well made and very positive movie video on improving one's health through proper eating of a mostly meat free diet. Mega nutrition and lower calories, naturally.
You can go to the 'Fat, Sick and Nearly Dead website and watch the video. Great book and Great video!