Am I deluded

Hi folks,
I have some thoughts as follows. I have had four DC cardioversions this year. July then 10 days later then clear until last week when I had to be DC cardioverted (mainly flutter) Monday and Wednesday.
Today I am in NSR. I may last a day, a week, a month, a year or two or three or four in NSR. These figures are all realistic and possible.
At the end of 2006 I had over three hundred afib/flutter attacks. However I just knew Flec was for me and pushed and tweaked to get into NSR with it. I had some bumps in the road but finally got where I wanted to be.
I feel my heart (substrate) would degenerate as quickly as any ones if I drop into persistent a fib/flutter. And since I have documented over the years typical, atypical flutter and a.fib then my ablation would be as per any individual with all these problems and I need a top tier ablationist. i.e. Bordeaux. I know that is sensible and is quite likely the route I will take.
Here comes the wishful thinking and feel free to attack/assassinate/annihilate me on this part anyone.
I still do believe my biggest issue is high threshold triggers not a substrate (heart) issue. I base this thought on the fact that until this year I had a blissful three year patch of NSR by avoiding triggers and using 250mg of daily flec.
I was pretty rock solid the vast majority of the time, zero PACS and the heart as quiet and calm as anyones, just perfect. In the odd bad month I would get say a few days of PACS if I had been pushing too hard without sleep.
At the moment I am so vagal I don't think I could have an attack while awake. But at night be it sleep apnea or whatever I am not sure, but it's like having a reverse cardioversion.
My heart is being electrically stimulated big time to change from NSR into Flutter as I transition to sleep.
So my reasoning is my heart overall needs very little work but my triggers need attacking big time.
Maybe it's an illusion but with my history I feel I really do have some specific hotspot in my heart and if that was addressed I would do really well i.e. I feel my heart is generally in pretty good shape and would not need much ablation to do the business just ablate the keys areas.
I know this is all pretty hypothetical and in most respects I agree with Shannon that piece meal ablations (burn as little as possible) are a waste of time and you need pretty extensive work to avoid future problems but does my thinking about my heart not needing much ablating since I have so much NSR have any merits?
I am not stupid enough to go with an inexperienced EP to test my hypothesis although it does make me more amenable to a visit to Ernst versus Bordeaux, however I am not completely sold on my idea.
I wouldn't be surprised if she got in there and said "geeze" (or more likely the german equivalent) how on earth do you maintain NSR, the electrics in here are crazy.
Anyway just some more thoughts.
My biggest worry with Bordeaux is bankrupting myself if I have a major complication and need to pay for surgery. Or the cost of touch up ablations etc. There are other considerations with family etc.
I am definitely not saying no to Bordeaux and understand why it makes sense to see the absolute best. Just putting out some thoughts and feelers.

Thanks
Mark



Edited 10 time(s). Last edit at 09/26/2014 06:24AM by Robo11.

I think your getting ahead of yourself a little bit. If your Vagal-mediated, and all of your episodes occur in your sleep, then you should follow through on a formal sleep study, and have the results analyzed by maybe to sleep Doctors.

I suggest keeping a detailed log of everything you did preceeding any future attacks, to follow up on the the trigger aviodance route.

As for the Ablation, it's your heart you have the right to use your own insticts and intuition in this decision, as long as it is within the acceptable bounds to AFIB treatment, a condition which has broad latitude and flexiblity in treatment options.

I think Jackie did a limited Ablation a long time ago, and did well, untill finally going back recently for a full-blown procedure.

Thanks Anti-Fib. I have edited my post.
I added some details about my more recent issues on the first line.

Thanks for your input.

Mark

I'd go and talk to Dr. Ernst, taking your extensive history with you.

I wrote this summary for a friend who is planning on seeing Dr. Natale. There is a link with more info and Shannon augmented what I wrote as well.

I would use the description of how Natale goes about ablations - that is leaving the LAA for last to minimize the chances of needing a) lifetime anticoagulation or b) a lariat or watchman procedure to deal with thrombus formation in the LAA. I would ask Dr. Ernst her approach and how it compares or contrasts with Natale's. Also dealing with flutter at the same time as afib.

This would give you a basis for making a decision with comfort.

She is clearly someone I'd trust to be my ablationist - and that is not a long list.

Cheers,

George

Thanks George

My initial ablation in 2003 at the time was state of the art... certainly not abbreviated or limited for what was standard at that point in time.

That lasted well with a few minor glitches when I became inattentive to magnesium and potassium intake. However, in the last two years of those 11 since the ablation, the inflammation/irritation that occurred from treating a reactivation of Lyme and EBV, caused mostly A-flutter which as mentioned in other posts, tends not to self convert no matter what 'magic' I tried. The source of the triggers for flutter were in the area of the LAA and involved LAA isolation to manage.

Six weeks later, my heart remains calm and I am gradually improving in energy and stamina as time passes, fortunately.

Jackie

Hi Mark,
I can't speak for your somewhat unusual characteristics (I hardly ever have episodes while asleep, but I recognise that sense of optimism (I prefer not to call it delusional!). Since my last episode (beginning of July) I've had 3 months of NSR. In previous years that has extended to up to 2 years of NSR. So, ordinarily, I'd now be thinking 'maybe I shouldn't have that ablation'.

The big difference is the mini-stroke I had in July. In my view, AF, in itself isn't the biggest cause for concern. I've had 15 years of paroxysmal AF and, while it's always depressing, I could just about live with it, if there were no other ramifications. But the implications of a full-blown stroke are just too frightening - I had a 30 second glimpse of what that might be. So, despite all my perennial optimism, I know I have to put aside my quest for the answer to 'what triggers the triggers?', and just try and prevent AF from resulting from those triggers.

Dr Ernst (and, in my case, her current clinical trial) offer me the best chance of having that done. She is confident that the 'hot-spots' can be found and dealt with. I'd recommend you talk to her.

I could just about afford to go to Bordeaux, but I don't believe the cost-benefit analysis supports it.

Finally, there's the question of timing - the longer I leave it the harder the procedure will become, in terms of a successful outcome. So, it's a personal decision, and please contact me if you want to find out more about my treatment in December.