Have most people here had ablations?

I'm still relatively new to Afib and this forum.

I'm still learning names/stories.

Have most posters here had ablations?

i have yet to even meet with an EP. 99.9% of my knowledge of Afib has come from this forum.

I don't know what the percentage is but I'd guess it's about 50/50.

One thing to keep in mind with any sort of medical support forum is they don't accurately represent the full patient population. Most people who undergo successful ablations don't tend to hang out in afib forums. They just go on with their lives and pay no attention to afib. So what you tend to find in forums like this are people who are new to afib like yourself and people who are having difficulty dealing with it. So be aware of that when drawing conclusions.

My apologies if you've answered this before, but if you've never seen an EP does that mean you're not on any sort of meds, including an anticoagulant?

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Carey
I don't know what the percentage is but I'd guess it's about 50/50.

One thing to keep in mind with any sort of medical support forum is they don't accurately represent the full patient population. Most people who undergo successful ablations don't tend to hang out in afib forums. They just go on with their lives and pay no attention to afib. So what you tend to find in forums like this are people who are new to afib like yourself and people who are having difficulty dealing with it. So be aware of that when drawing conclusions.

My apologies if you've answered this before, but if you've never seen an EP does that mean you're not on any sort of meds, including an anticoagulant?

I went to the ER on 11/27 after a night of what I thought was "weird heart" palpitations.

As soon as they hooked up the EKG, this doc on call said "Afib." (I had almost zero knowledge of this.)

They scrambled around for a few minutes looking for "cardizem" (I think that's what I heard). Then, I went into regular rhythm. I'm thinking the Afib was from about 11PM to 9AM.

The nurse practictioner came in, told me that, depending on the cardiologist on call, they would probably send me home on a daily aspirin regimen.

However the cardiologist came in and told me that I had troponin (it was .17) and they needed to keep me to run some tests because I may have had a heart attack. (The NP said it was probably just the Afib, but they had to be sure.) The next few tests for the tropinin level showed no increase.

Anyway, spent the next day doing tests (stress, echocardiagram) and sent me home on Eliquis and blood pressure meds.

It is my own faul (I didn't know what to ask), but I didn't know any more about Afib that when I walked in the door.

And, at my follow-up visit with the cardiologist, the only time she mentioned Afib was when I asked about an upcoming trip to Disney. She said "No problem.....oh, but you might go into Afib on a roller coaster."

Right now, I'm taking the Eliquis, Bisoprolol w/HCTZ combo pill and Amlodopine.

Now that I know a little more, I want to find an EP. I have ot admit I'm still a little freaked

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Carey

One thing to keep in mind with any sort of medical support forum is they don't accurately represent the full patient population. Most people who undergo successful ablations don't tend to hang out in afib forums. They just go on with their lives and pay no attention to afib.

Not sure if your response is instinctive or data backed but I suspect there are a lot of lurkers only on this site that are ablation veterans who still tune in regularly to keep updated as we all wonder if it will return. We want to do the right thing when and if it does but we don't have the immediacy that comes with currently suffering Afib so we seldom if ever post.

I remember years ago Hans occasionally running a poll about one thing or another. Maybe Shannon would be interested in more feedback from his database..

Gordon

No, 14.5 years with 2.5 month episode in 1st 4 months. Path to afib was chronic endurance exercise. Path to remission( 1st two most important): detraining from endurance training & competition while maintaining fitness, magnesium to bowel tolerance, 4g/day taurine, 2-4g potassium. diet to keep insulin levels low and optimizing metabolism. PIP (on-demand) flecainide to convert when the previous fails (used infrequently - flec goes past expiration before it is used).

Hey Gordon,

Good point and something like that may be possible down the road a bit, but for the next number of months, in addition to my daily many calls with Afibbers from our group who are at that place in their AFIB experience/history that they are seeking guidance for an ablation, my dance card is quite full now not only with my calls, but excitingly starting over the last two weeks, with the beginnings of our long awaited and anticipated website redesign process!

I’m very grateful to a very generous member of our forum who, from his own gratitude from our assistance in connecting him with Dr Natale to fix his own AFIB, and the overall high quality of our Afibbers Forum discourse (thanks to each and everyone of you!!), he has asked his own company’s in-house highly-experienced web design team to take on the full task of revamping Afibbers.org for us into a modern, flexible and responsive design that is very easy to use!

As many of you know, this has been a big goal I’ve had since taking over this special AFIB resource from Hans, but had been postponed with only myself keeping the site going. At least until recently over last year and a half.

Ironically, too, a little over two and a half years ago when we hired an expert from Germany to upgrade the Phorum Platform coding behind our Afibbers and GH Forums, that update also suddenly opened up our entire history of posts on the forum gong back 15+ years of threads and posts so that Google and other search engines could finally actually index everything said on our forums going back to the beginning! Prior to that time, nothing was ever indexed directly on any search engines from our forum’s history.

Also please note, that the first 4 years of the Forum history was inadvertently lost when creator of this resource, Hans Larsen, switched the forum platform software from its original format to this open-source Phorum Platform we have used ever since. In addition, every word captured on this forum, up until 2.5 years ago, failed to be indexed by any search engine, which greatly reduced any consistent recognition and positive ranking of Afibbers Form posts on the web until this search engine block was rectified!

Our only real ranking for all those years came from our status as the oldest AFIB-related patient education and advocacy site online. And we were lucky back then to even just earn the bottom of page 3 ranking, at best, and usually more like page 5 or 6 on most searches!

Within three months after the forum upgrade, our entire Phorum platform content started being indexed in search engines everywhere, and we suddenly sky-rocketed up to a very high ranking for many AFIB search results. Over this past year, we now often get from 5 to 12 new people a day actually registering to start threads and submit posts on both forums! Note too, withbthe big influx I often have to gradually meter folks into active registration so as not to over run the first two pages with too many similar questions at one time (we plan on making that process of registering more streamlined with the new redesign of the website as well.

That, in turn, means far more folks finding us each week who are also at the point in their AFIB ‘careers’ where they are seriously wanting an ablation. Hence, the vast majority of my time the last couple years has been dedicated to helping such folks make the best choices they can for this most critical decision in their AFIB journey.

In any event, I am very excited we are now starting the website redesign in ernest and look forward to ‘gradually’ adding some great new content, as well as preserving most all of our existing content (with some updates as needed) in our archives so that everyone can explore our full history of information and insights as they wish.

Cheers!
Shannon



Edited 1 time(s). Last edit at 02/03/2019 12:43PM by Shannon.

Great news, Shannon. Wonderful work!

--Lance

That is great news Shannon.
As to Carry's response I would agree. I visited this site often when I was first diagnosed with AFib. Once I had my first ablation I visited less frequently then not at all. Only to return last year.

In hindsight I should have continued to follow the forum in some fashion.

I started having Atrial flutter 25 years ago. Started paroxysmal intermittent A-fib about 5 years ago. I Finally went to a cardiologist when I went into permanent A-fib about 8 months ago. I haven't had ablation yet because.... well, I'm a coward, but also because I've been told it's only 50 - 70% successful. I have an appointment scheduled with an EP next week.

I believe that there are rarely acknowledged, never mind discussed, side effects and long lasting after effects from undergoing an anesthetic. I figure the fewer times in my life I have to have one the better off my brain will be. Having said that, if the alternative is being on antiarrythmic medication for the rest of my life, it's equally as daunting a prospect as the anesthetic/surgery.

I guess I'm in here trying to educate myself. It's disconcerting to read that most people are on their second or even third ablation. Does anyone regret their decision to do this surgery?

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MFM
It's disconcerting to read that most people are on their second or even third ablation. Does anyone regret their decision to do this surgery?

I think you answered your question with your followup about having 2-3. There is no better feeling than NSR and what it affords you in quality of life. Personally I have had 3. However, I only count it as 2 because my second was not thorough enough of a procedure. I would also have another need be.
I do know someone who has had side effects from anesthesia. His memory has been effected somewhat but its not debilitating in anyway compared to the debilitation he had corrected. There are plenty of risks in life and not sure if those risks are any more likely to affect you than the risks of general anesthesia.

Gordon - you are correct that there are many who used to be active, but are still reading. When I began participating it was late 2001 and many of those members (and going forward from there) do occasionally send me an email to stay in touch or comment about a topic they've read recently on the forum. Afib does seem to "connect" us for a very long time.

Shannon - that's awesome. How very kind and generous. I look forward to the new look.

Jackie

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MFM
It's disconcerting to read that most people are on their second or even third ablation.

Because I had a 2.5 month episode at the beginning of my afib career 14 years ago, I would likely be considered a "complex" case. I would likely need two procedures, even from a top doc like Dr. Natale. I would likely need work on my LAA. This would give me a 60% probability of needing either lifetime anticoagulation or the installation of a Watchman or similar device.

If my afib situation deteriorates, I would have no qualms going through this and recommended my best friend do this with Dr. Natale. He did and after 2 procedures has been in NSR since. He fortunately ended up in the 40% who did not require anticoagulation.

The key is choosing the best ablating EP you can arrange. In general, the horror stories come from those who were not aware of this advice. Where I live, in the Front Range of Colorado, I only know one person personally who has had an ablation locally where NSR has been maintained over a long period (10 years in this case). All the other people I know with a local ablation did not maintain NSR. Those I've suggested go to Austin (or in one case to Natale's protege' Sergio Pinski at Cleveland Clinic Weston FL) have done very well. For those outside the US, I've suggested those folks go to Bordeaux. They've done well also.

Currently, I am contemplating whether or not to proceed with an ablation. Having been diagnosed under 2 years ago, I tried to

go the natural route which does not seem to work for me. Episodes seem to be getting more frequent and as a result I just went

on Eliquis. George, I noticed that you recommended Dr. Sergio Pinski at the Cleveland Clinic in Weston. I live very close by to

Weston, however, everyone seems to be talking about Dr. Natale. If you ever needed to have the procedure done which doctor

would you choose and why?

Thank you, Shannon, for all you do for Afib folks... soon everywhere!

/L

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whitehaven
everyone seems to be talking about Dr. Natale. If you ever needed to have the procedure done which doctor

would you choose and why?

Everyone's talking about Natale because he's probably the best EP in the world. I would choose him over anyone else, hands down.

I concur with Carey. I'd go to Natale. When I referred my cousin to Pinkski, I didn't think I could ever get him to go out of town to Natale. Pinski was a good option for him, and it worked out well. In years gone by there were a number of FL posters who loved Pinski. But as Carey said, Natle is the best.

As far as regular Posters, I think most are Ablationees. I can think of only 3 regular Posters in the last several years that are Ablation free. Me, GeorgeN, and Liz.

In terms of overall Posts from newcomers to the site, maybe it is 50/50.

" Me, GeorgeN, and Liz." Have i completely passed from your consciousness? Never was ablated, i assure you. These days, due to a series of blunders by my doctors and myself, i am in permanent afib. i am not particularly uncomfortable, though of course i would prefer to be in NSR.

PeggyM

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The Anti-Fib
As far as regular Posters, I think most are Ablationees. I can think of only 3 regular Posters in the last several years that are Ablation free. Me, GeorgeN, and Liz.
.

There's a couple of others myself and Dean



Edited 1 time(s). Last edit at 02/09/2019 07:06PM by colindo.

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peggyM
" Me, GeorgeN, and Liz." Have i completely passed from your consciousness? Never was ablated, i assure you. These days, due to a series of blunders by my doctors and myself, i am in permanent afib. i am not particularly uncomfortable, though of course i would prefer to be in NSR.

PeggyM

Great to see you posting Peggy! Keep on keeping on!! We've been here on this board a long time. I recall when I was first here 14.5 years ago and you were keeping "The List" of those who'd been able to keep the afib beast at bay. Then you compiled "The List" in Conference Room 61 <[www.afibbers.org] .

Hope Skowhegan, ME is treating you well! I recall having a nice lunch with you 12 or so years ago.

Cheers,

George

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peggyM
" Me, GeorgeN, and Liz." Have i completely passed from your consciousness? Never was ablated, i assure you. These days, due to a series of blunders by my doctors and myself, i am in permanent afib. i am not particularly uncomfortable, though of course i would prefer to be in NSR.

PeggyM

No, I thought about including you in that statement, I didn't realize you had been posting in this last year. Nice to hear from you. I remember the Post about the Dr's not informing you about your AFIB status leading to Permanent AFIB. I was saddened and angered by that. I hope you are doing well.

We're in Colorado, too. Do you know anyone whose cardiologist is Christopher Stees, D.O. at Health One/Denver Heart? I just started going to him after an initial 2 hr self-converting episode of a-fib w/rvr. Our older cardiologist in Summit County retired and was replaced by an obnoxious posterior body part, so I searched carefully and chose Dr. Stees. He seems excellent but I have reservations...

This is my first post, so thanks to all! Long story short, I am a 66 y/o professional medical provider who spent decades believing that well-informed dietary choices, tons of exercise and smarts would help me evade health problems. HA! Karma stomps hubris again!

Thanks to afibbers.org, I've added 2 - 3.5 g dietary potassium and 2.5 g taurine to my daily mag regimen, dropped the sodium and calcium, and relieved most symptoms of PACs and 4 second runs of PAT. Most, not all. Still struggling to figure out what I need to do to avoid deteriorating into an ablation candidate, but if I do, wondering if Dr. Stees is the man for the job. Can't afford to travel...

Thanks again, everybody! Quite the helpful body of knowledge and experience here :-)
Annie in Colorado