question about ablation

Hello!
I've been checking on this list for a few years, occasionally posting. I appreciate all of you sharing your experiences with afib. I have an ASD (atrial septum defect) from birth, only discovered 4 yrs ago at age 66, which was the 1st time I had any heart symptoms. At that time my afib started. I had the hole closed at Stanford U Hospital in Calif 3 years ago. My heart went down to a normal size and I see some benefits from the closure and I am very grateful I got to have it done.

But my afib did not stop, as it apparently usually does after a closure in a younger person (40 and under) I have since been trying to use natural methods to deal with my afib.
I am a health nut and my diets, etc, have helped my general health quite a lot, but not my afib. I feel really good when I don't have afib. But it is certainly disrupting many aspects of my and my husband's life and it is scary, of course.

I fear meds and ablation scares me, too. I did have a period of 6 months, a year ago, where is just about stopped completely, but then it started up again. I have no idea why, although we have wracked our brains to try to figure that out. The percentage varies from month to month. Right now it is usually between 3% and 5% in a month. It always self-converts. It seems to be slowly getting worse, although it is not a straight line at all. Some months are significantly better than others. I cannot identify any triggers at all, although I have tried endlessly. The only identifiable "thing" is that I usually have afib around every 1 or 2 weeks. When not in that zone, it feels like nothing could trigger it. When in that zone, it feels like anything could trigger it. I have tried about 20 diets, herbs, homeopathics, acupuncture, supplements. I am significantly hindered in this quest by not living in the US anymore and by not having tons of money. There is way more I could try if these 2 factors were different, but they aren't.

It's hard to even get supplements most of the time, in foreign countries, but I do what I can. I take magnesium, potassium, taurine, vit D, most of the time when I can get them, but not in the amounts I would like to. I eat low calcium and keep tabs on salt. I eat no processed foods, no sugar, no caffeine....etc etc....all the suggested stuff.

I am starting to consider ablation, which I really don't want to do. My husband is scared and worried and I know what it's like to be the support person....actually harder than being the patient, I believe. So I agreed to at least look into the medical "answers", so we can consider them. I see so much variation and complication with them...but I am now trying to research it a bit. There seems to be many many kinds of procedures and it seems like the results vary a lot and are not as positive as I would, of course, like to see.....but surely some people are helped, some of the time...it seems.

That's a lot of background about me. sorry. This is my main question:

I have full financial coverage at Stanford, which is very fortunate. (not for medications....I take none now....and of course it would be expensive to travel and stay there) I have Medi-care and financial aid at Stanford. So it would make the most sense for me to have a procedure there. They have, of course, EP's and Cardiothoracic Surgeons and talk about their expertise and all their different procedures. One of the EP's, Sanjiv Narayan, is somewhat famous, and invented FIRM ablation. And another doctor there invented cryoballoon ablation. I am confused by all the technical terms and all the various procedures, but I suppose a good doctor would know which to do? I can do some research, but can't get extremely technical, I just don't have the head for it.

I hear so many of you rave about Dr. Natale, I have read many of the posts about him and I understand these highly favorable opinions.
Has anyone experienced Sanjiv Narayan or any of the doctors at Stanford?
Do any of you have opinions about going that route? He is certainly not a "local EP" and apparently travels all over the world performing ablations.
And the fact that they did my closure might also make it a good idea.

I am interested in anyone's thoughts on this. I am also definitely considering gong the Dr. Natale route and will see if he takes Medicare and also try to consult with both of them so I can compare. I'm not even sure if I am going to do it.

Another question......is my afib percentage too low for an ablation....and also the fact that it self-converts?

Thank you ! Barbara

Hi Barb,

I have a cousin who is a quadriplegic. He also has afib. He gets his care at Stanford. I know he and Shannon have talked about the care there. I do not know the details. You might PM Shannon and see if you can set up a time to chat internationally on Skype or some other app. When you PM him, let him know what time zone you are in and what your schedule looks like. To do a PM, go here <[www.afibbers.org] and put Shannon in the To: field.

As to cyclical nature - Hans Larsen, the founder of this site, wrote about this years ago here: <[www.afibbers.org]

Good luck!

George

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I am also definitely considering gong the Dr. Natale route and will see if he takes Medicare

He does take Medicare. I've been following Afib forums for a few years and I think you might do well to get the basic questions answered here before a consult as each EP has favorite ways of doing things and you might get a more complete picture here.

You say you have Medicare at Stanford. Does that mean you have a Medicare Advantage plan? Or do you have traditional Medicare. It's going to completely change the picture if you have an Advantage plan (but you can change that if you do).

Thanks for answers, everybody.
George, that is interesting about your cousin I will see about talking to Shannon.
Carey, are you saying it's better to have Medicare Advantage or worse? I can't tell what you mean. I have regular Medicare.

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Barbcat
Carey, are you saying it's better to have Medicare Advantage or worse? I can't tell what you mean. I have regular Medicare.

No, I wasn't saying one is better than the other. I was only asking because if you had Medicare Advantage, there's a good chance Natale would be out of network for you. But since you've got traditional Medicare you're good to go.

Barb,

As an FYI, Medicare Advantage plans typically work like an HMO, hence you are usually restricted to providers in the network. These plans are also usually the lowest cost. Plain Medicare is the most flexible, allowing you to go to whoever accepts Medicare. Your cost issue will depend upon what Medicare supplement insurance you carry, if any.

George

I am very sorry to hear about your situation barb.

I was (and still am) under 40 myself, so I can empathise with the impact of afib on your life.

I'm from the UK, but I have heard a lot of the people on here talking very positively about Natale, hopefully you can get to see him.

I have a United Healthcare Medicare Advantage plan and it paid for my Natale ablation last year using the In-Network rate. At that time you needed the Passport stamp on the card; now the program was renamed to Medicare National Network (Choice Plan 1 - Regional PPO). Other companies may have similar plans. In any event you should still check with Natale's office.

Thanks for all the helpful replies, George and others. I wrote Natale tonight and also PM'd Shannon.....as you suggested, George.
Just exploring options, at this point.

Re: the article that Hans wrote about cyclical afib:
I have tried reading that article 2 or 3 times, since that is the one thing I can identify about my afib. I really hoped to get some help from that article. These are the problems I had with it.

1. it is so technical, I can't really grasp it all, but I do get the general idea....something is building up that needs to somehow get processed or released or something. That is the exact feeling I have about what might be going on....just intuitively.

2. I can't do the testing he suggests, living outside the US.

3. It seems like he did extensive research to try to figure out what was going on, and it seems like he did come up with some conclusion about that......but....my main disappointment.....he doesn't seem to have ever done anything about it, or figured out anything that would help use this information to stop or to help reduce his afib burden. As far as I could tell....there was no help that came from it....which was frustrating and a little hard to understand.....since he got as far with it as he did.

Not sure if that makes sense. What do you think about that, George? if you have time to answer.

thanks ! B