Ablations that continue to be " touched up" numerous times then maybe a conversion or two ...or persistent asymtommatic afib? Or, drugs that bring their own risks but may help for awhile. Is there anyone out there who has had one ablation and still afib free after five years? Very few choices out there and none seem to work.
Which is worst?: Ablations that... - Atrial Fibrillati...
Which is worst?
Written by
CCW66
To view profiles and participate in discussions please or .
41 Replies
•
BobDVolunteer
Most of those who have never stay on forum. One or two may still be around.
I'm 8 + years post ablation #3. and AF free.
You had three ablations, correct? So glad to hear you are afib free but three is an awful lot. Wonder if one ever works?
I had an ablation in 2005 and it kept me clear of AF and drugs for 8+ years. Then I got a little back, 2nd ablation was aborted, now back on drugs but they are working fine with no side-effects I can detect. Even though my AF has returned, the ablation is still working I reckon, in that the AF now is absolutely nowhere near as bad as it was 10-12 years ago.
Koll
This is wonderful...so glad to hear. Lots of terrible stories online re ablations so very hard to make informed decision.
I have not heard of nor read 'terrible stories' or know of many bad experiences of ablation, especially here, even if they don't always work. It's really not a bad procedure so I wonder where you are reading these stories?
What is it that is so terrible for you?
Cardiac tamponade, esophagus fistula(fatal), percataneous puncture, stroke and death---all risks.
But very, very rare ones.
Yes--maybe. Some new data coming out that estimates complications at higher rates than 1percent --possibly more like 5-6 percent. Depends on what you are reading. Thank you for the dialogue--all information appreciated.
It's really quite simple. Without an ablation AF becomes progressively worse, with episodes occurring more frequently and lasting longer. Drugs slowly lose their effectiveness and quality of life deteriorates. Not an inspiring prospect but one that will almost certainly occur. On the other hand, a serious, life taking or life changing complication during or following ablation therapy almost certainly won't. There are no absolute certainties in life of course. Surely all we can strive for is the best possible journey.
I've only had the one ablation and it's kept me free for twenty months. Not five years yet, but I'm confidently optimistic. However, those twenty months have been so infinitely sweeter than the previous twenty that I wouldn't hesitate to repeat the procedure.
And Bob is right about the success stories. I for one am a rare visitor to this forum nowadays as it gradually loses relevance in my life. But if I have to return at some point in the future, it's comforting to know it's here....
Where are those studies published. There is loads of speculation these days that amount to nothing.
What are the criteria or ground rules? If, as often happens, the ground rules are changed or tweaked, particularly if things are added, in the light of new knowledge then that may make like for like comparison invalid or adjustments necessary.
If you look at the reports for the UK the actual occurrence of some of the complications is way below what they "should" have been according to the statistics and some haven't occurred.
So for instance if the occurrence is 1% and then there are 5,000 ablations(I think there were more in 2014 and previous years but I'm not sure) then 50 should have had that complication. If only 0 to 5 have had that complication then it is less than 0.1%. Medical statisticians seem to overly state the risks. Is this to protect themselves from claims?
I think you are right to look at complications of ablation and to look at quality of life at present if you are asymptomatic- also depends on age as if young, drugs would be taken for many years- not too good!!
As I mentioned in a post recently the complications statistics are world wide statistics. They also do not differentiate between otherwise healthy patients and patients who have AF but have underlying heart problems.
At my local hospital, a known centre of Heart Excellence in the South of England, they told me,in answer to a straight question that they have never had a serious complication following an ablation procedure.
I can attest to the fact that I have now had 5 ablations without any problems post ablation. The only thing is that they always have to be very careful with bleeding from the groin as we are anticoagulated but in my case recently they used a gadget called a Femstop and after an hour all was well.
If you thought that every side effect of any drugs you take for your AF were going to apply to you you would not take any of them would you.
As CDreamer said in her post - complications are very rare.
By the way I have just had the last 30 minute phone call regarding a world wide study that I was part of for the past 3 years. Not sure when the results will be published but maybe this will provide more up to date data.
Statistics need to be taken in context and If you are at all concerned talk to your EP and ask the straight question that I did.
"Now then, tell me how many of the listed, known complications you have advised me could occur, have actually happened at this hospital?"
Pete
During my last ablation they used Esosure to move my esophagus.
Look at the report on the AFA website about ablations by area, complications, etc. You will see that they are less than the quoted percentages.
You take a risk every time you walk out of your house or get in a car. Hundreds of people are killed each year on the roads.
I wasn't really thinking of the risk of the procedure itself. I've had open heart surgery. My surgeon considered doing a Cox-Maze procedure at the same time but thought it was too aggressive an approach in my case.
I was really just interested in how many ablations worked first time, judged by no repeat procedure within 5 years (my criteria).
I'd love to see some sort of league table showing what percentage of people are AF-free 5 years after first ablation and how many require more than one procedure.
Despite decades of progress, contemporary ablation approaches for atrial fibrillation (AF) have reached an efficacy “ceiling” with reported single-procedure atrial–arrhythmia-free survival beyond 3 years after percutaneous catheter ablation of 54% for paroxysmal AF (PAF) and 42% for persistent AF (PeAF) (1).
Quote from JACC, 2016.
Can you send me the link to this article please?
Not sure how to attach article...it is on the Cleveland Clinic website.
Me too. I suspect that most of the numbers are not very good. The only published results I have found are on the Cleveland (Ohio ) website. Their outcomes look very positive.
Very hard to tease this data out of even the most well known providers. When they do give numbers, they are very vague and based on known criteria I.e. One percent fatality rate and not site specific.
BobDVolunteer
And as I said earlier it is pointless trying to judge it from here as only the failures tend to stay in touch. I do believe that there are lots of success stories out there judging by the number of people I have encouraged along the way who no longer post here. Good news seldom travels. Bad news always.!
Yes, you are right...maybe we need a forum for positive ablation success stories.
I am on my second ablation which has been a success and I'm back racing bikes. I always knew that I would need a second ablation to shore up any gaps and if need be a third. I have confidence in the research, success and expertise and professionalism of experts in this field. I have received the best advice from Professor Schilling and Treatment from Dr Mark Earley at Barts and would not hesitate to recommend ablation where suitable as the best treatment for Atrial Fibrillation.
Deciding what to do in terms of treatment for AF is not an easy decision. Trying to analyse the statistics relating to the treatment options is virtually impossible because there are so many variables. In the UK, around 1m folk have AF and less than 0.5% of that number have joined this forum. Picking up on Bob's point, there is a strong nucleus of regular contributors, but the majority of members move onward and hopefully, upward having benefitted from advice and support so freely given here. I do not know the answer to your question and I doubt that anyone will, but fortunately there is a lot of information out there to help people make a valued judgement about what is hopefully right for them.
All the best, John
Good post - I have taken the drug route (Flecainide) for 30 months now successfully but reluctantly. As you say the choices aren't brilliant and if I am honest with myself, I chose drugs as the only way to buy time until they improve the various procedures with an ablation including the success rate of ablations or they introduce an external control method. The last 30 months has also given me time to cure it (I am an eternal optimist!) as I have Lone PAF and every test under the sun has shown the body is fine. The dilemma doesn't end when lifestyle/diet/supplements with the drugs work very well (I feel absolutely fine) as you don't know which bit(s) is critical to your good health. Hey hoe have a good day.
I had my cryoablation in 2008 and apart from short episodes of PAF dealt with by a pill in the pocket (Flecainide ) things at the moment seem to be ok. Hope this post doesn't precipitate major probs!! I am looking after my hubby who has PCa so stress is part of my daily life and it's a good job I got the heart sorted when my consultant agreed to treat me.
I feel you are taking a very gloomy view here CCW66. None seem to work... Some certainly do but most people who have had successful ablations don't want to read about AF and cease to contribute to the forum.
The terrible risks have to be divided into two - those that are fatal or life changing and those that are temporarily alarming but treatable with minimal long lasting effect. I think the things that do go wrong - occasionally - mostly fall into the latter category.
Lots of us who have had ablations that have not been a success (in terms of banishing AF completely from our lives) have been substantially improved by the ablation. If nothing else, the sense of taking positive action to deal with this blight is uplifting, especially when you surface and realise you aren't dead.
I feel most people who counsel delaying ablation or express doubts about the procedure turn out not to have had one.
Many thanks to all my replies. This is the best source of info I have discovered and learn a lot from everyone's experience. I am in the ablate/not to ablate question and answer mode. Also I am one of those weird cases with no underlying causes...afib just roared into my life. Know research is trying to find a drug that stops the errant electrical charges before they start ...like Lipator for high cholesterol. This would be the ultimate cure but who knows when.
I was in that mode and my answer was 'not to' but something happened which changed my choice to 'ablate or have pacemaker + meds' - I did have complications after the ablation and my AF is not 100% cured but I'm off all drugs and very very happy with how things turned out. Incidentally the complications led to proper diagnosis and treatment of a bowel complaint which I believe probably affected my AF in the first place!
Hi. I had one ablation that was deemed unsuccessful at 6 months. I was scheduled for a touch up job 18 months later. This had to be aborted as the needle used to go through septum pierced my aorta which could have been immediately fatal or cause cardiac tamponade. My E.P sent me to coronary care for observation and as it turned out I was fine. E.P. Won't attempt it again so I was to stay on high dose of flecanide for as long as was possible. Then an exercise stress test showed that flex was causing widening of QS complex so had to reduce to a level that previously would have had me in A.F. But so far nothing. Presumably this now means that I am a success after 1 ablation as I am on considerably less medication. I can only assume that in my case more scar tissue grew even after 6 months.
When I started down the ablation route I accepted that I would need two for success but I would only have been happy if my A..F. Had completely gone. Now I am happy with what I've got and just hope it stays that way!
I think that although it is hard we just have to accept that treatment for A.F. Wether it be ablation or medication or both, will probably be constantly evolving and that at this moment nothing isa complete cure. X
You must have been terrified. So glad all is well. Check out Dr John Mandrolas blog--ep in Louisville KY. Very conservative balanced view of afib and it's issues/fixes( sort of ).
Hi, I had one ablation in September 2009 so seven years ago now and I am still doing well. I consider myself 95% cured. I still have some thumps and flutters an occasional days when I feel a bit feeble, maybe breathless and a bit giddy. But I dont have the full Af episodes I used to have.
I got my life back after the ablation and that is still how I feel. I have not taken any drugs since the ablation, thank heavens because I did seem to have all the side effects with Sotalol and could not tolerate Flecainide at all.
So there is hope. Good luck.
Hi CCW66 First of all thank you for following me. Your question re 'which is worse' gives me a few questions of my own. In the US it is rare to think about 'touchups' as an ongoing event' kind of like touching up our hair color every so often. That said, before surgery it was explained to me that down the road I may need a second ablation; the reason being is when first done, the surgeon has to make a decision as to how many cells to ablate (knock out-meaning remove their ability to electrically fire in the heart. Often, depending on the anatomy and function they find during surgery they may choose to ablate less than more-leaving them the option to leave more cells intact rather than permanently destroy cells that can't be brought back. You can always have more cells ablated down the road if necessary but you can't 'resurrect' ablated cells. This is for your protection. By checking you cardiac status (ekgs, etc) periodically, function and further needs are evaluated. Don't mean to be so technical. Just think of one of life's principles: You can always return and do more work but you can't always return and replace. Better to be conservative. As for the surgery. It is usually done with only one night in hospital. For me, I had no pain, didnot need pain med and felt better re breathing, tiredness, etc almost immediately. Do you also have a pacemaker? And what country do youlive in. I don't mean to make ablation sound like a day at the beach, no surgery is ever that simple or easy and should not be taken lightly. But there is no hurry. Talk to your electrophysiologist about what medical avenues will work best for YOU. Will you be able to get off meds? Do you have other problems which may make a different path better for you? You need to have your questions answered to your satisfaction before you sign on. If possible, a second opinion can be valuable. If you do research (google etc, read blogs like this) you will know what to ask and have the confidence to make the right decision. One thing I always try to do esp re medical decisions is to talk to people who can actually give me unbiased, appropriate info. So I don't discuss with friends, some family members, casual party acquaintances (LOL) or anyone who only has 'hearsay' info or their own opinion about various treatments not soundly based. Take your time, trust yourself and you will make good decisions for yourself. Boy, I can really give dissertations, can't I? I did a lot of teaching as a nurse and believe people can't have too much knowledge. Knowledge is power! I hope my thoughts make your path a little easier. irina1975 and keep me posted how things go.
Not what you're looking for?
You may also like...
which smart watch is best?
I have a Fitbit but I’ve heard that an Apple Watch is better for detecting Afib - wondered if...
From PAF to permanent? My worst Afib yet.
My worst Afib yet. Yesterday at about 6pm I had a bout of PAF. Heartbeat was iregular and just...
Is Afib binary?
Apologies if this is a bit basic. I have a lot of uncertainty as to whether I'm in Afib or not. Is...
which type of Afib
How do you know which type of AFib you have? Nothing in the paperwork says if it’s permanent or...
AFIB IS STRESSING ME OUT!!!
I have been a healthy athelete (boxer) until I was 56 years old, thats when I started having afib...
Is Afib linked to anxiety ?
Is this angina?
Is there any success story that people had truly cured their afib?
Is there such a thing as ‘slow AFib?’
