Ablation success stories

[joebob]

Hi,

I'm after some information about successful ablations.

I really just want to know what life is like after ablation - is everything back to normal like the good old days before you even heard of AF?

Any information would be greatly appreciated.

[SRMGrandma Volunteer]

Once again, everyone is different, but for me it's great. I am only 5 months post ablation, and 142 consecutive days of NSR (not that I'm counting but yes, everything is back to normal....travel, chasing grandchildren, making love, being able to laugh with friends, eat a meal, or sleep on my left side without that worry of going into AF is priceless. I'm healthier than ever, full of energy, and on a scale of 1-10 I feel like a 15. I've got my life back and there isn't a moment where I'm not thanking God, St. Rita and my amazing EP who spent 9 solid hours doing an ablation doing what he promised, which was to "beat the crap out of your atria".

[BobD Volunteer]

I think it is important to stress that we are all different. Ablation should and must be considered as part of ongoing treatment for AF. Will it improve your quality of life? Yes of course. Is it a cure for AF? The jury is still out on that. Statistically there is a 50% chance of AF returning within five years. Well I'm six plus now and no AF but that doesn't mean that I don't have other arrhythmias like ectopics and short runs of tachycardia. Has it been worth it? You betcha! Would I do it again? In a nano second if needed.

One word of caution. Life moves on so wishing for something in the past is dangerous. In my case I am eleven years on from my diagnosis and eleven years older with a few other health issues so nothing is the same as it was. Thank goodness as AF has taught me the value of living every day as if it was my last. One day I will be right!

Bob

[Hidden]

I had bad AF that turned 24/7 in 2003. I went onto drugs which worked but had side-effects. So had a PVI ablation in 2006 under sedation, to get off the drugs. It worked 100% and immediately, just took me a few days to recover. I came off all drugs except anti-coagulants just prior to the ablation and stayed off them. I felt absolutely GREAT. I could not detect any heart beat at all, just wonderful silence, really weird but pleasant.

My EP said I would probably get a return of AF in 5 to 15 years. After 8 years I got a teeny-weeny bit of AF back and I am now back on drugs which are working fine and no side-effects this time, that I know of at least!

Hope you have a good one if you go for it.

Koll

[Samiul in reply to Hidden]

Hi Koll

good to hear that you doing great. I am 27 years old male who got afib out of no where.

I was officially diagnosed with afib 2016 about 3 years ago and my cardiologist kept me on flecanide 50 mg twice a days. So far no afib at all but some side effects like fatigue, weakness, white spot in vision and dont have enough energy to workout which affecting my quality of life. So, I am going see an electrophysiologist for ablation. I want to know how old were you when you got afib ? has it returned and if so are you thinking of 2nd ablation?

Thanks

[SRMGrandma Volunteer]

One more thought before I hop on a plane....still in the category of 'everyone is different'.....I suspect you could compare two individuals with pretty much identical outcomes of their ablation and one would think the result is perfect and the other could be disappointed. Everyone has different expectations. For me, I'm optimistic by nature. I don't spend much time thinking about dire predictions or the if and when if this ablation stops working. Just living in the moment, being grateful for every day of NSR means is a huge success and a happy life. I was a happy person despite the days when AF was plaguing me, (though a little less energetic) and I'm happy now. Ablation or no, live your life as best you can!

[davythom in reply to SRMGrandma]

As always a positive post

[MikeMHaddock]

Hi joebob, in a word yes, it took two goes but it gave me 6 years of 'back to normal'.......had to continue with the Warfarin but no problem with that. After 6 years the A/Fib returned and now back on Amiodarone......will not hesitate to have a further ablation if it fails again.

Best wishes,

Mike H

[jennydog]

You say " my AF seems to have progressed." When you get to the stage of saying " I don't want to carry on like this" then you will know that ablation is inevitable ( if it is offered because an EP considers you a suitable candidate )

If it is offered then you should grab the opportunity otherwise you may well live to regret not doing so. it's a £15,000 procedure and not offered lightly.

I had it done in Aug 2014. My heart was damaged by aggressive radiotherapy to my shoulder 25 years ago. I was given a 50% chance of improvement with no chance of a 2nd ablation. I now have occasional mild AF. I can live with it as 100 flecainide is an effective pip. Best of all I tried, and I have no regrets.

[AlanAF in reply to jennydog]

Hi - (My first post here!) I am interested that you say it's a £15,000 procedure - where is that figure from please? Thanks.

[jennydog in reply to AlanAF]

I understand that it's a standard NHS costing. You should look up SRM Grandma's (volunteer) page to see what her ablation cost in America. It will make your eye's water.

[AlanAF in reply to jennydog]

Thanks. I'm confused. This web site claims you can get it for between £2-4k in the North West

privatehealth.co.uk

This web sites gives the cost of the surgeon and anaesthetist as £2.4k.

cshealthcare.co.uk/default....

I assume there would be some additional costs, though never having had private healthcare, I have no idea. Do you have to have insurance in case in goes wrong?

[jennydog in reply to AlanAF]

Did you see Grandma's details?

I would think that £15,000 is reasonable. There is EP's consultation, loads of tests, pre-med, overnight stay and associated care, laboratory facilities, umpteen people present at the ablation, subsequent follow-up etc, etc.

There's an awful lot to it.

Re private treatment : after a recent experience I never want to have anything more to do with it. Rather than wait 11 months to see a consultant about my shoulder I paid to go privately. I left the room armed with an X-ray form. A woman descended and said in one breath " Oh you've got a form, I can X-ray you now, that will be £220." The original consultation was £180 but the add-ons were horrendous.

It was all about money, money, money.

There's a lot wrong with our NHS but we're very lucky to have it.

I have never heard of anyone taking out insurance in case it goes wrong but I suppose that you can get insurance for any eventuality. I honestly didn't expect my ablation to go wrong.

[Rellim296]

I suspect that many people who would be saying YES! and yes again are not going to respond to you joebob because they don't look at the forum any more.

[Hidden in reply to Rellim296]

And that includes me as the only reason I looked for this forum is when my AF came back, prior to that it wouldn't have crossed my mind as I was just normal.

[joebob in reply to Rellim296]

I know. I am guilty of this myself as I only really come onto these forums when I'm experiencing AF. When I'm in NSR I prefer to forget that AFib is even a thing!

[Swale]

I've had two ablations , my second was back in February. Apart from the odd ectopic I've been back to normal. So yes I've been pleased with my ablations.

[PeterWh]

I was in persistent AF and had an ablation at the end of March. I went back into persistent AF less than 72 hours later (in MY case the EP said that there was no chance it would work first time - it was just a case of how long I lasted in sinus). However I don't regret having it done at all and regard that as a leg on my AF journey.

As to symptoms, etc some things definitely improved even though I went back into persistent AF. For instance at least 60% of days, probably more, I suffered from diahorrea but afterwards that has dropped to about two or three times a month and when I do have it nowhere near as bad.

[Japaholic]

I am 4 months post ablation and I am doing OK, same as bob said, some ectopics and odd rhythms but NO AF which is the important part.

If it comes back, I wont hesitate to have a 2nd ablation and will do so ASAP.

[Samiul in reply to Japaholic]

Hi Japaholic how r u? I hope you are doing good I am also thinking of ablation I was diagnosed afib 4 year ago no afib so far because of medication ( flecanide 50 mg twice a day). But it comes with side effects like tiredness fatigue etc so that s y I want ablation to get rid off it. So I was wondering how are you doing after your ablation??

[Japaholic in reply to Samiul]

I’m glad I did it. I still have AF but now once or twice a year not 20 hours a day every day.

Mostly my drugs now control it but if I miss or get sick (like when I had flu this winter) I might get it.

That said, I can live with it.

Before the ablation I couldn’t.

Does that make sense?

Go for it I say, I would do it again tomorrow in a blink for the good it’s done me

[Kodaska]

I've had two ablations, both successful.

The first one was in April of 2014 to correct a-flutter which I'd had intermittently for the previous year. The ablation worked great, although I developed AF a few months later.

The second ablation was in May of this year and it was also successful. I've been in NSR ever since. I had paroxysmal AF, with fibs happening 15-20 times a day and lasting from 5 seconds to 2 hours. They didn't bother me, but when fibrillating my circulation was impaired and I had trouble doing even mildly strenuous things. Since I was an active person, it was important to function as well as possible.

However, I now have what my neurologist calls a drug-induced autoimmune disorder that has ruined my life. And that's no exaggeration.

Following the second ablation, my EP/cardio put me on flecainide to prevent breakthrough arrhythmias, despite my objection. He said people don't like arrhythmias, and I reminded him that I don't mind them because then I know what's happening, and anyway they'll eventually go away as the heart heals. He countered that my heart had been under a lot of stress and that I should make it as easy as possible. I reminded him that I have a particularly strong heart (I'm 66 and can work at 160+ bpm). He insisted. I yielded.

Now I spend anywhere from two to 14 hours a day dizzy, fatigued, and/or bleary-eyed. I no longer ride my bike, go wilderness canoe tripping, take music lessons, or even go on a date. All this because I can't drive or function well when symptoms are active. And it's completely unpredictable.

Cardios don't know that flecainide suppresses the brain's immune system. And of course, you don't know if you have a bug in your head (e.g., Lyme or syphilis) that can do damage when the immune cells are deactivated. So taking flecainide is a crapshoot, like playing Russian roulette with a gun that has room for 1,000 rounds. There's one bullet and you have no idea if it will line up with the barrel until you spin the cylinder.

So, my ablation experience has been great. It just gave me the opposite results from what I was looking for.

Sorry to be such a downer, but you asked.

[Janey11 in reply to Kodaska]

Sorry to read this. Are your symptoms improving at all or the same?

[Kodaska in reply to Janey11]

Thanks, Janey. Things have improved in the past couple of months, thanks largely to a change in perspective. It's hard to explain, and I'm not sure how it works, but adopting a more proactive, positive, damn-the-torpedoes attitude both drives away symptoms (sometimes) and seems to have increased the number of good days. I don't understand it but I look forward to continuing to learn about it.

I suspect it's about endorphins and neurotransmitters, but that's only a guess. The good thing is that I have plenty of time to work with it.

[Jomama in reply to Kodaska]

wow, so sorry to hear about the Flecainide problem. Actually it confirms my decision not to take it. I have Paroxysmal afib and it's not very often. It started once or twice last September and then didn't return until March. I only get it at night after eating and relaxing. Finally in May 2016 was diagnosed. Was put on Pradaxa and I also take 240 mg daily of Diltiazem. I can mild afib a few times a week that converts to NSR in any time from a few minutes to a few hours, but never more than 4. Since I was having a run of them a few times a week, my EP wanted to start me on Flecainide 50 mgs twice daily. Filled the script but when I read the warnings I flipped out and decided not to take it. She reassured me that it would be fine; she prescribes it to pregnant women and even their growing fetuses! I was too scared though, and switched EPs and decided to get an ablation. New EP said I was a perfect candidate and that he doesn't like the anti-arrythmics drugs for me as combined with the diltiazem it would slow my rhythm down too much and make me feel bad. I decided to just go for it and try to cure this problem (I know cure is not supposed to be uttered) so I don't need to be on all this medication for the rest of my life (I'm 60 and otherwise healthy and active). I am hoping that after my ablation the doc doesn't suggest taking Flecainide for a few weeks while the heart heals. I'm just scared of these very powerful drugs!

[Kodaska in reply to Jomama]

Don't base your decision about flecainide on my experience. I was wrong. Actually, I have late Lyme disease that must have been triggered by something during the ablation. It certainly wasn't flecainide.

However, your EP is right in being concerned about combining flecainide and diltiazem. It's done but drugs.com has a warning about it because diltiazem is similar to another drug that has a bad interaction with flecainide.

I totally agree with your thought about not taking flecainide post-ablation. My EP told me that if I didn't take it, any arrhythmias that might occur would not interfere with healing. I asked him then why should I take it? His response: "We like to make sure our patients are covered." I think he really meant they like to see that their rear ends are covered (i.e., insulated from acccusations of malpractice).

So take that as one person's experience. Best of luck in yours.

[Hilarie]

A belated comment because I don't tend to log onto the site unless I want info and I have just posted a question about self-testing kits for warfarin monitoring. I saw your post and wanted to tell you about my experiences of ablation.I have had AF since 1994. My first ablation was in 2013 and it cured the AF 6 months although the actual procedure was horrendous in that my lung was punctured. The subsequent lung drain was more painful than having a baby or a kidney stone. Anyway, I agreed to a second ablation in March 2015 because I had enjoyed 6 months being AF free. So far the second ablation has worked completely and I feel fantastic. I can exercise and enjoy life as I did in my thirties before AF kicked in. (I am now 66.) So, go for it!

[Samiul in reply to Hilarie]

How are you doing now? I just had ablation and I m only 27 years