To ablate with Natale in Feb. or wait for tech breakthroughs

Hey everyone,

I saw Dr. Natale in California and he said that he believed I had persistent afib, vs paroxsysmal even though I rarely have a breakthrough on 200 mg daily of flec. His feeling was the flec was stopping incidents that wouuld otherwise occur if I was not on it, making it fall into the persistent category.

He said that it would very likely take an ablation and a touchup to get rid of the afib. Of course I was bummed hearing that, but he said he was being on the conservative side in his estimate of success.

My question, are there big breakthroughs in the near future that would make it worth delaying the procedure, since there is no urgency, other than the fact that I really want to be off flec after 12 years?

Happy New Year,
Michael

Michael, happy new year to you too. I think getting Dr Natale to do your ablation is hard to beat. He also has access to all the latest tools. I don't know of any new new thing that would improve upon what he already has access to within the next several months. Did you pose the same question to him? If so, I would be curious in how he answers the question.

I did mention it to him, however with Natale, I believe he is involved in so many trials that he would keep some of them private until he truly embraced them.

I mentioned the "rotors" from the FIRM trial and he did not get overly excited.

I really do not have a technical understanding of what all these things mean. I do have a feeling that a year or two from now Natale, or someone else will have a more magic bullet.

I was just hoping that the many brighter people than me might have a thought on what's in the pipeline.

Hi Michael.

A few thoughts to consider in your deliberation about what to do.. Firstly, it appears you have had AFIB a minimum of 12 years now since you have been on Flec that long. That's quite a while and you have gotten good use it seems out of the Flec before it either stops working or turns on you which it often does after some period of time of working well. Though some folks, such as yourself, do get quite a few years of service from the drug, even if with side effects to deal with as well.

The question you need to ask yourself too now is if you might be getting any periodic silent or passing episodes at night or that you might not notice in spite of the Flec generally doing a fairly good job of keeping things quiet'? If you dont have an on-board monitor or pacemaker that can record any blips that happen it can be hard to be sure, especially after such a long time with AFIB and particularly when it has gone persistent as that tends to reduce the severity of symptomatic effects somewhat over time.

The other point is that after so much time on Flec and still with some breakthroughs, and if Natale is correct in his diagnosis that you have persistent AFIB as it is now that would very likely be fully running at 24/7 if and when the Flec finally stops working, or when it might possibly become pro-arrhythmic, then you cant be sure how much underlying re-modeling and/or scar tissue/fibrosis is continuing to progress, if indeed any low level hardly noticed activity is periodically happening now?

You don't want to wait too long either until the Flec finally stops working or itself becomes the triggering agent for overt persistent AFIB to suddenly hit you full on as it did me after taking Flec as PIP dosing some 13 years after I first started with paroxysmal AFIB. I waited about a year too long thinking the same thoughts you are having now and it resulted in a lot more complex first ablation needed with much more burning than would likely have been necessary if I hadn't procrastinated too long with the idea of 'waiting for a new breakthrough', even when my supplement routine had clearly stopped buying me added time as it had for the most part during 6 to 7 years previously.

I know it is hard to make such decisions. But I think it is clear you are going to obviously need a good persistent AFIB ablation in the not too distance future. Waiting until the drug has failed to keep the beast at bay any longer isn't the most appealing or sensible strategy in my book. When the Flec fails it often does so fairly quickly and then you might have a three plus month wait to get to see Natale for ablation at that point and three months in 24/7 symptomatic AFIB that at best you can only control somewhat with rate control CC blockers and Beta Blockers is not much fun and may will contribute to a more challenging ablation than if done earlier.

If you were going with some lesser experienced EP I might be a little more willing to suggest waiting a while longer, but with a guy like Natale who knows these ropes so very well and gets very good results overall with the most challenging cases , even though some do require a touch up to be done, waiting for the next projected breakthrough can easily become and kind of excuse to continue postponing what may better done sooner rather than later. There will always be progress in this field, but alas our own AFIB isn't always so courteous to wait until the next holy grail is discovered and in the meantime you could be making things slowly worse for yourself instead of better?

If there was still some realistic option that you could get this turned completely around with a stringent supplement protocol, even combined with drugs, I'd feel better about you waiting, but I gather you have explored all of that thoroughly in your 12 plus year AFIB history?? In any event, don't wait due to the hope and expectation of some paradigm changing breakthrough that only 'might' happen some day in the future. You are already set up with the best possible operator you can find to handle a persistent case and he has complete command and access at the bleeding edge of technology and understands intimately what is likely around the corner and what is more pie in the sky.

Talk to Dr. N again if you need to clarify all this, but ask yourself honestly if you really think some major breakthrough is just around the corner in the coming year that he has no idea about that would somehow obsolete the highly refined procedure he already does on difficult persistent cases every day now!

And when he says he is being conservative in his statement that it may require the main first ablation then a touch-up down the road to get persistent AFIB out of your life, he is indeed being conservative. Often his persistent cases do turn out to be 'one and done' as well, but with the complexities of persistent AFIB it isn't possible to be sure a given person will only need one procedure and no more prior to doing the first ablation and so he rightly feels its better to have every one expecting a second ablation being needed and if you get it all done in one then consider it a bonus!

The second touch-up ablation is typically much shorter and far less work than the first one anyway.

You have to decide what is best for you here, but keep in mind my experience and that of others who procrastinated a bit too long and had to have a more challenging ablation as a result.

Best of luck in sorting this all out for yourself!
Shannon

Mike: You have to weigh the potential benefit of a magic pill or procedure coming within a year to the risk of you perhpas not being as good of a candidate for a procedure then or whenever the new stuff gets approved by the government. Anything that would be approved in the next year would certainly be in trial phases now. If you want to be a guinea pig for something new, tell Dr. Natale and let him recommend either way..

Dr. Natale know of what's in the pipeline. He's the expert and you'd do well to follow his advice. He certainly has enough patients that he doesn't need to enhance his business by suggesting you get a procedure you don't need.

Gordon

Gordon Wrote:
-------------------------------------------------------
> Mike: You have to weigh the potential benefit of
> a magic pill or procedure coming within a year to
> the risk of you perhpas not being as good of a
> candidate for a procedure then or whenever the new
> stuff gets approved by the government. Anything
> that would be approved in the next year would
> certainly be in trial phases now. If you want to
> be a guinea pig for something new, tell Dr. Natale
> and let him recommend either way..
>
> Dr. Natale know of what's in the pipeline. He's
> the expert and you'd do well to follow his advice.
> He certainly has enough patients that he doesn't
> need to enhance his business by suggesting you get
> a procedure you don't need.
>
> Gordon

Hi Gordon,

Agree with your suggestion for Mike and your last point is certainly true. In my frequent meetings and conversations with Dr. Natale there has never once been even a hint of him trying to urge or cajole me or anyone else into a given procedure. He has zero incentive to need any particular patient to pad his stats or raise his experience level. And I have found him to be straight forward, direct and honest in his assessment of what he feels is best for each person that comes to him. With a three to four month backlog in three cities he certainly doesn't need to twist any arms and then have to deal with a reticent patient who is backing into this thing.

Shannon

Shannon:The barrage of anecdotal information regarding the attributes of flecainide seems staggering.
However, I'm not aware of any scientific evidence that confirms this. The CAST trial did establish the pro-arhythmic effect, but that was in people with ischemic heart disease. As someone who has used flecainide for over a decade, I would be interested in acquiring any information that confirms some of the statements. "Flecainide becomes the triggering effect for persistent A fib" et al. Thanks.

Mike,

I am guessing that Dr. Natale will take you off the flec prior to the procedure. After it gets out of your system you may find out your true afib burden.

He is one of the best, he doesn't need FIRM to find your trigger points. I would not wait.

EB

Hi John,

Flec doesnt become pro-arrhythmic for everyone by any means. For quite a few, apparently such as yourself, it can remain a good option for a long time. And among AAR drugs I consider it probably the best option overall for most people with Vagal AFIB.

I don't at the moment have at my finger tips studies that indicate its pro-arrhythmic potential, but in addition to experiencing thatt effect directly myself in Holland which moved me from a long history of Paroxysmal into veyr hard to control persistent AFIB/Flutter in one episode, I have been told of its pro-arrhythmic tendencies by every single EP I have seen and spoken with about AFIB and Flec .. that includes a lot of good docs like Dr Haissaguerre, Dr. Boersma and three other Dutch Cardios and EPs who treated me when I was in and out of an Amsterdam hospital for two months after I flipped into persistent AFIB after my Flec-induced AFIB /Flutter episode at end of May 2008.

In the US, Drs Natale, Gallinghouse, Hong, Cataldo as well as Dr. Hao have also all confirmed to me Flecs potential pro-arrhythmic nature and none were surprised nor refuted in the slightest the European doctor's diagnosis of a Flec-induced conversion from paroxysmal AFIB into persistent AFIB/Flutter after seening my EKG and treatment summary from that ER visit and the subsequent Hospitalizations those next two months before Dr Natale took care of the Persistent AFIB.

I may well have been on my way to persistent AFIB in any event, and I imagine that is true, but it wasn't until taking that particular dose of PIP Flec that morning that I first experienced the chest-crushing sensation of 1 to 1 flutter which was very different than any regular AFIB I had experienced over the previous 13 plus years. From then on with persistent AFIB it was never the same again as it was with paroxysmal AFIB.'

Its good that you are still benefiting from Flecanide with your form of AFIB, hope it lasts for you indefinitely. And if it ever stops working for you, at least you know there are effective alternatives as well.

Shannon

The 1:1 flutter is fairly rare, but can be quite devastating. Thank you for the clarification.

Yep I thought I was a goner with that initial 1 to 1 flutter episode and teh Dutch EP converted me at least with a large dose of IV Amioderone to a more normal AFIB/FLutter that was then 24/7 from that point onward until my ablation a little over two months later in Austin. And every EP who saw that ECG after the PIP Flec trigger said to me, "That's it for Flecanide for you, never risk it again" So I've definitely listened

I did have a 2 to 1 flutter two years later in 2010 after the persistent AFIB portion was eliminated by Dr. Natale in my first longer ablation, and that was no fun either but not quite so urgent feeling as the initial one. Never want to experience that again and hopefully I wont have too now that step two in what Natale told me from the beginning would likely be a two step process and with an outside chance it might require a possible third touch up ablation needed at some point to get it all behind me including these atypical left flutters for good!?!

At this point I haven't had a single blip of anything since my Left atrial appendage isolation ablation last August 6th so am knocking on wood that maybe I am done now? You never know for sure but it does feel good and solid at this point. Dr Natale feels confident I'm very likely done now too, but since left atrial appendage isolation requires more delicate ablation work than normal, he can't be as fully sure and confident that one more quick touch up wouldn't be needed at some point due to him not being able to be quite as forceful with the catheter in isolating the relatively thin-walled structure of the LAA. But that's better than getting a tamponade and apparently with my heart being so totally quiet since this last ablation that is a good sign I may be done, in any event, with the ablation part of the business for the foreseeable future ... sure hope so!

I'm just so grateful I've had Dr. N handling my very difficult case from the beginning as I really doubt I would have had it so good so far elsewhere.

Take care John,

Shannon



Edited 3 time(s). Last edit at 12/31/2012 01:49AM by Shannon.

Hi Shannon,

Would you please elaborate on your flec usage history prior to it becoming pro-arrhythmic. Also was it your habit to pre-treat with a BB when using it PIP? The time it became pro-arrhythmic, were you active after taking it?

Thanks!

George

Hi George,

As I recall, from almost five years ago in Amsterdam, I was taking some Verapamil for rate control whenever I would have a fast HR or flip into AFIB prior to going persistent after that PIP Flec dose. I never took Flec consistently as a prophylactic protocol. My EP in Hawaii gave me the PIP Flec routine when I moved to Amsterdam for four years as he had visions of me trapped in my charming fourth floor canal house in the heart of the canal district in beautiful Amsterdam in a raging AFIB attack with not much help around so that was the plan for the PIP Flec.

I had taken it maybe 10 times successfully to convert from AFIB to NSR in about 2 to 3 hours each time and not always but often I would first take the Verapamil when an episode started in hopes that would slow things down and eventually would convert on its own.

On the fated day in question, I woke up with a strong AFIB in the modest-size Dutch town of Nijmegen and while still in bed took the PIP Flec. I really don't recall if I also took a Verapamil at that time, but its certainly possible. About an hour after I took it while trying to doze off some I suddenly woke with a startle feeling this intense crushing feeling like the classic 'elephant sitting on your chest' where it was very difficult to take anything close to a complete breath and the ring of pain and pressure was wide and surrounded the outer area of my chest and abdomen.

My heart was going a mile a minute as well and felt bruised from pounding on the inside of my sternum and ribcage.

The thing is, that at that time my dear friend and I were visiting her brothers house and had arrived just the day before the Dutch Euthanasia Doctor and nurse were to come to his house, that very morning, to arrange for his euthanasia to start that very same day that my crushing flutter started after taking the PIP-Flec!

The brother had a terrible form of Clear-Cell Sarcoma cancer. He had already lost his leg a year earlier at only 45 years old with a wife and three kids and was going to die for sure soon anyway and he wanted to spare himself and his family a prolonged traumatic ending. Euthanasia is widely practiced in such circumstances in Holland and some other EU countries in what I consider a more enlightened perspective as an option for a more peaceful death when all else fails and the long hard grind is all that is left.

In any event, we had come down from Amsterdam to say our 'goodbyes' and be with him and his family in this vigil while he passed on. So, in any event, this very morning in which I woke with this terrible AFIB and they were going to put him to sleep for good with all of us there in just a few hours!!

I was mortified when I realized how serious my condition had become and very well thought I might die before he did and couldn't imagine interrupting such a day for him and his family. So without telling anyone I crept out of the house, got in my friends car and started driving toward what seemed to be the center of Nijmegen thinking I would surely find a Hospital somewhere near the center of town. I didn't make it more than half a mile when I was forced to pull over at a Shell station (they have those too in Holland and barely able to move I had to ask the lady running the stop and go store part of the Shell station to please call me a cab to take me to the nearest Hospital. She called an ambulance instead and they first sent a Dutch EMT on a motorcycle with a 12 lead ECG on the back, Once he confirmed that I was in very high speed flutter/AFIB he then called the real ambulance and they got me to the ER where they discovered that I was going in and out of 1 to 1 flutter and swinging into AFIB and back again to the very fast flutter.

After a few hours of trying every IV drug in the book they were going to ECV me (and knowing what I know now, I would have insisted on the ECV the moment they wheeled me into the ER) , but instead the EP want to try one last option and he used a large dose of IV Amiodorone and that temporarily did the trick. It did end the swings in and out of 1 to 1 flutter, but the whole experience left me in persistent AFIB/Flutter for the next 2 and a half months until I could make it to Austin and Dr. N's EP lab. I've often wondered if I had gotten the ECV instead of Amiodorone, if that might not have bought me at least a couple months of relative quiet while waiting for the ablation?!

Thankfully, I had already seen both Dr. Haissaguerre and Dr, Natale about four months earlier and thus had a formal relationship with both Bordeaux and Dr. Natale. Since I had already chosen Dr. N due to the fact that my US insurance would pay for the whole thing and because my meeting with Natale, after I had already met with Haissaguerre a month earlier in Jan 2008, had convinced me that Dr. Natale could certainly do an equally good job and I really liked him as well as I did Dr. Haissaguerre. And it was also reassuring that both men had such high regard for the other and were good friends.

The rest is well recounted elsewhere here.

Anyway, that is the story of my PIP-Flec episode and how it played a role in my flipping from Paroxysmal AFIB to Persistant AFIB/Flutter. Hope that is what you were looking for George.

I was not taking any BB at that time just prior to taking the PIP- Flec and my conversion to persistent AFIB/Flutter. However, during that two and a half month wait before my ablation while stuck in that very symptomatic persistent AFIB/Flutter I did have to add a very low dose of 12.5mg of Toprol to the 180mg of Verapamil a day in order to finally more or less stabilize my persistent AFIB rate at around 90bpm which made it all much more tolerable, especially for my long trip from Amterdam to San Fran to see Dr. N once again, and then fly down to Austin two weeks later for the ablation.

Shannon

PS, For those who might be interested, regarding the euthanasia of my friends brother, they have two options in Holland. Either you can drink a drug cocktail after saying final good byes to family and friends and you are dead within 10 to 15 minutes, or you can do what Marcel chose and that was a central line placed in the upper chest in which they infuse gradually larger doses of Morphine and Versed so that you are completely out and it just looks like you are sleeping until after a couple days you just stop breathing as the drug dose gets lethal. This was felt to be the better way especially with younger children in the house for which a sudden dramatic 'drink of Socrates' is a bit abrupt for sure. That way its more like 'Dad is sleeping' and they can speak with him even though he isn't aware, and the kids and wife can lay down beside him if they wish and process it all more gradually over a few days until he simply passes away in his sleep.



Edited 6 time(s). Last edit at 12/31/2012 08:04PM by Shannon.

Wow, Shannon, what a story. I know the area you mean in Holland too. A great place (to not have afib in).

Shannon,

Thanks! Yes that is what I was looking for. That is quite the experience. Your notes (and Steve's) about the complexity of persistent afib motivated to quickly consider an ablation slot at either Bordeaux or with Natale's team when I was having nightly afib converted with flec six weeks ago. Miraculously, ginger has worked to control this, so I'm again feeling comfortable with no afib and not pursuing an ablation at this time.

George

Good news on the ginger front George,

How much are you taking and in what form of ginger??

Happy New Year!
Shannon

Shannon,

Is there an alternative drug to flecanide?
I have just come off it because of the side effects, mainly constipation, and flutter.
I did try ginger, but it wasn't very nice to take. Can we get empty capsules?

Colin

Colindo,

Some afibbers have found disopyramide (Norpace) to be an acceptable alternative to flecainide. You may wish to give that a try.

You can get empty gelatin capsules in the afibbers.org vitamin shop [www.afibbers.org]. Just search for gelatin capsules. You may also wish to try the organic ginger extract from New Chapter. You can find it here [www.afibbers.org].

Hans

Thanks Hans,
For the Norpace tip as a replacement for Flec for vagal afibbers .. and the reminder about New Chapters Ginger Force.
Shannon

Hi Shannon,

I missed your question. I'm taking organic ginger powder - sold as a spice. I'm taking 1/2 tsp in the morning and 1 tsp in the evening. I don't have a gram scale, 1 tsp taurine is 4 gr. If I assume ginger powder and the taurine powder have the same density, that would mean 6 grams ginger powder/day.

I started out with a heaping dinner spoon morning & evening. I thought this might be a bit more than needed and dropped it to the 1 1/2 tsp/day. I'm not sure what the optimal dose is.

George

Thanks George,

Hopefully I wont find an occasion to need to try it for this purpose, but I do get a bit of ginger extract in two herbal formulas I take as part of overall health and immune boosting function so perhaps that will help a bit all around as it is.

Shannon