Afib persists after 3 ablations and open heart maze

I have atrial fibrillation that is ultra persistent.
My Afib has a rapid ventricular response and I experience symptoms.
I have had 3 ablations and the Afib came back.
I had open heart maze surgery and the Afib came back.
I have had numerous cardioversions.

I am middle age and don't want a pacemaker and risk the heart becoming "floppy" because the heart continues to be in persistant Afib, and then I develop heart failure.

Is there anyone out there that has had a similar history to me?
What have you ultimately done to treat the Afib?

I have been told that there is nothing except ablations and amiodarone, neither of which have helped me.

Catherine

"I have been told that there is nothing except ablations and amiodarone, neither of which have helped me. "

Catherine, that is not precisely always true. About there being nothing else besides drugs and surgery, i mean. Quite a few people posting here have used supplements and dietary changes to get control of their afib episodes.To read approximately 50 people's experiences in so doing, including just what supplements and what exact brand names and what dosages and exactly what dietary changes they used, go to Conference Room Proceedings session 61, titled "Protocols for reducing/eliminating afib."

These methods do not help everybody, and we cannot guarantee they will work for you. They worked for me and for a number of others here. I think they are worth trying, especially since you appear to have run out of alternatives. These measures do not have any bad side effects, like medications sometimes do, and nobody that used them has yet woken up dead, as can happen from inept surgery. In no case do we recommend taking unsafe levels of anything.

To find the conf.rm proceedings. do this: scroll up on this page to look at the yellow boxes at the top of all pages here. Across the top they read CONFERENCE ROOMS,GENERAL HEALTH FORUM, ,MY AFIB JOURNEY, and FORUM ARCHIVES. Click on FORUM ARCHIVES. In the page that appears, scroll down to see the list of the Archives of Bulletin Boards. Click on the next to the last item, just above the Medical Glossary, marked Conference Room Proceedings. In that page, scroll down to see session 61. and click on that. All of the Proceedings sessions make good reading for an afibber, but get to them later. Most of the people whose stories you will read in session 61 can still be emailed, at the addresses they gave when they posted, and many of them are still posting here on this bb. All of them posted these stories here so as to help others do as they have done. All of them are willing to answer any further questions you may have about just how they got rid of their afib episodes.

Please do keep posting. We do want to know how you are doing.

PeggyM

Wow, Catherine! Might you be able to share who all the procedures were with?

So sorry to hear of your plight. Do believe you may wanna pursue some of the other interventions we discuss here.

Good luck to ya, and please keep us posted on your progress. Thanks.

/L

Catherine, I don't have any answers but I really hope things get better for you. You deserve it.

Catherine,

I certainly agree with Peggy, that if you have not pursued alternative methods, you need to do so. You can find more examples of people that have been successful using non-surgical/non-ablation approaches in LAF Survey 14: Non-ablation/Non-surgical abatement [afibbers.org].

However, while you can not have another maze procedure, you can have another catheter ablation; but I would certainly only suggest that if you have it with Dr. Natale or another really top-notch EP. In any case, a consultation with Dr. Natale would be the first step.

Hans

Hi Catherine,
Very sorry to read of your trials and tribulations. I concur 100% with both Peggy and Hans here. Its a very good idea to pursue the nutritional avenue, if for nothing else to help improve overall health. Its possible too that with a better electrolyte/antioxidant status it might help any future procedures attempted to be more stable and successful?

However, the odds of the nutritional route alone working well for controlling such persistent AFIB are not too high .. particularly if your Ejection fraction is low and the diameter of your LA is above 55 or so.

Have you seen Dr Natale yet? He would be my first stop at this point. The number of past ablations isn't as important as who did them. In any event, Dr. Natale easily has the most experience with these kind of difficult cases of any EP in the world ... Certainly in the US ... and if there is anyone who can get you back to NSR here in the states its him.

Are you in left flutter or is this true documented rapid AFIB or a combination of flutter/AFIB? And by rapid ventricular response, just how fast is your heart going now?? Did they remove your left atrial appendage during the open heart mini-maze?? And by open heart do you mean they cracked your sternum open and put you on a heart lung bypass??

It may be that the reason no one has hit the right mark yet is that your main or only trigger area could well be around the opening mouth of the Left atrial appendage and this can still be electrically active even if you LAA was physically removed during the mini-maze, particularly if the incision point for removal of the LAA left a small vestigial pouch behind in which most if not all of thee electrically active zone around the original mouth annulus of the LAA is still there and is conductive.

Natale is definitely the one to sort all this out and in the meantime you can work parallel by really embracing the supplemental Strategy advice on this site and see what, if any, benefits might accrue? No doubt you will experience some significant consistent overall health benefits as many of us here have, even if the arrhythmia is presently beyond solution with a nutritional strategy alone. In summary, go for the Strategy protocol now and do it with commitment, but also get an appointment with Dr. Natale ASAP so you are not pushing the issue too far out into the future. Nothing like killing two birds with one stone at the same time.

You can likely get an appointment with Dr. N quickest at his Austin office, but also San Fran is an good option too if that is more convenient for you? Typically you can get in for a thorough consult with him within three months from now, so setting something up now is highly recommended. At least you owe it to your self after all that you have been through to get the very best opinion available on what is possible in your complex case.

Take care and all the best,
Shannon



Edited 1 time(s). Last edit at 11/13/2012 02:54PM by Shannon.

Catherine - I'm certainly sorry to read about your ablation ordeals and that you are still having trouble.

I totally agree with Peggy that using nutritional support would help in many adjunctive ways because obviously, something fundamental is deficient in your biochemistry/biophysical makup that an ablation is not addressing. If you can do it, I'd start with Exatest (www.Exatest.com) and depending on the results, proceed by supplementing appropriately with the electrolytes needed. I'd be adding key nutrients such as magnesium, d-ribose, carnitine, Ubiquinol and Omega 3 essential fatty acids (and more) if you aren't already doing that. Maintaining NSR depends on heart energy production and without raw materials to make that energy, progress is virtually impossible... and surgical procedures don't address the nutritional deficiencies. If you like, we can direct you to a lot of reading resources on nutritional support specific to heart function and helping to lessen and reverse the tendency for atrial fibrillation. Just let us know.

As Shannon points out, the issue of the drivers that may be present around the LAA is certainly a consideration but in the interium while you are regrouping and planning your next stragegy, the nutritional aspect of what your body needs for overall healthy function won't ever go to waste. I also totally agree that a Natale consultation would be in order if and when you choose to have another procedure.

I can appreciate your sense of desperation, but there are still other approaches to explore.

Best regards,
Jackie

Catherine, I notice you have a Canadian email. Were your ablations done in Canada? It's my opinion there are very few top notch ablationists in canada. After 2 failed ablations here in Edmonton I was still technically persistent when I had my 3rd ablation done in Bordeaux france by Dr. Melize Hocini in April 2012. 7 months and so far no afib. I don't regret paying the approximately $25000 dollars. If you do decide to go the ablation route again it would be best to insure that you have adequate stores of magnesium and potassium in order to get the best chance for success. Also the best Dr. available.

Cheers

Adrian

Yes Catherine my history is very similar to yours. I have had 3 cath ablations, the first 2 lasted about 6 months and the 3rd (which included many ablation points) lasted 2 years, all the while on Rithmal and bold thinners . When that stopped working I had a thoroscopic 5box maze procedure. It lasted for 2 years with no meds. Then I developed A flutter. Right now I'm on Maltaq and blood thinners and I recently had a pace maker implanted for slow heart rate. So far I am staying in nsr with no side effects. But I am also looking into another cath ablation for the flutter. Like all of us I would like to be in nsr with no meds. I hope you can find a solution to your afib.
Jack C