Intro and Frustration

Hello,

At age 40 I was diagnosed with afib at routine physical. I had been feeling quite tired and in hindsight it was probably going on and off for years before. Fast forward three years later here's what I know. I am about to head into my 4th ablation next month. I am being treated at a top center at Northwestern in Chicago. First three ablations were after 8-9 months of perfect control on Flecainide, then basically one ablation every 6 months thereafter. My case is complicated as I have a persistent left super vena cava (PLSVC). I also have some bundle block though my EP does not really seem to connect them to Afib and says we see them in otherwise healthy hearts sometimes. My Atrium were not enlarged and other then the PLSVC pretty unremarkable.

First PVI was done with cryo and subsequent ablations with RF. First two ablations were pretty standard PVI and flutter. Third was to target PLSVC, coronary sinus and some other areas.

As I sit here I was just loaded on Tikosyn last weekend as Flecainide gradually lost its affect over the years. Tikosyn is not working, I am basically in and out 50-60% of the time. Will mange the rate in the meantime and maybe try a different ARR.


My understanding for the 4th abaltion is my EP will be ensuring no breakthroughs on previous work especially the PLSVC work which was like 69 burns and as he put it a big pipe to isolate. I know he plans on using some rotor technology and different mapping. My take is we are going to do a little carpet bombing. My case has been run through consult with every EP at center so I at least have that going for me.

If this does not work, I suspect I would be looking at surgical ablations but with the PLSVC the jury is really out on predictability. Pretty down these days as it definitely impacts my life. My afib is very symptomatic, my ejection fraction was at 25% when diagnosed, it came back quickly once in rhythm. Though being in and out a lot these days I am sure it is taking a hit right now.

Of course there is a lot of detail of the journey in there but it could be a book at this point. I am a non drinker these days, not over weight, normal BP and no other known cause. I try to keep a healthy lifestyle but am getting to a point where I am realizing it really doesn't seem to matter. Not that I am going to go crazy but more accepting this beast has a mind of its own and I need to let myself live with it so to speak rather than try to live in fear of it and everything that could trigger it.



Edited 2 time(s). Last edit at 08/08/2017 06:38PM by Fibrillator.

Welcome Fibrillator.

Please send me a PM with your cell number and I will try to call you in the next two days. Im just back home in Sedona from an AFIB conference in Dallas last week and am catching up on a stack of things the next two days, but would like to discuss your situation in more detail which will be easier and more thorough to do via the back and forth of a phone conversation to start with..

Just click the 'PM' link by my name at the top of this post and send me your cell number and I will likely call during daytime hours on Thursday or Friday at latest ... ( I only do AFIB calls during normal daylight hours, reserving the evenings for my wife and I).

Look forward to reviewing your scenario and possible best options.

Best wishes,

Shannon

Will do, thanks for reaching out.

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...after 8-9 months of perfect control on Flecainide...

Why did you leave the Flec?

An excellent question, I started getting break through panicked and was told an ablation was the answer. I honestly sit here thinking what if I had just stayed on the Flecainide and not had three ablations, maybe I'd be worse off, maybe I would have had random break through and be just like I am now, or somewhere in between or who knows of course. It is a question that somewhat haunts me right now.

At the time this was a real bombshell and still is. I was 41 and just wanted my old care free life back ( I still do ) and would have done anything. Of course now I'd be thrilled to get a month or two or three with no break through and would not think twice about an occasional short burst. Hind sight.

To be clear I never stopped Flecainide until this past weekend when I was loaded on Tikosyn. After that first 8 or 9 months, ablation one came about month 12, I stayed on Flecainide and after trying to go off after blanking period would get too much afib. That was the pattern after each ablation. The Flecainide still kept in check OK for past couple years say at 1 episode a month or 2 never lasting more than a few hours each. (seems everyone has a different definition of OK control). It's only been after this 3rd PLSVC ablation that I was getting weekly or multiple weekly breakthroughs. Though for the firs few months at 150mg bid it was once a month, then tried ramping down to 100mg bid and went crazy. Ramping back up to 150mg bid did not seem to help again and hence we thought try something else. Ablation related or progression of AFIB who knows.

As I sit here on TIkosyn day 6 in and out flopping back and forth even one episode a week would be welcomed. Amazing how I keep lowering my expectations!

I am somewhat hoping after years on Flec and then stopping suddenly for a week to load TIkosyn maybe my heart is reacting to Flec stoppage to and TIkosyn will work better in a little more time. Not sure if that is a real thing and just wishful thinking.



Edited 2 time(s). Last edit at 08/09/2017 09:11AM by Fibrillator.

Shannon will help you more than I ever can, but I can tell you to stay away from any EP using rotor mapping tech, aka FIRM. FIRM, as it stands right now, simply does not work. I was living proof until an elite, ok THE elite EP, treated me. I am fortunate, and you can be too. Very best to you Fibrillator.

He hasn't used Rotor yet, I think he mentioned it last time as I think he may be grabbing for straws. I follow with him next Friday and intend to have him layout exactly what #4 would be and why he would expect a different outcome. He did say early on in my treatment rotor was not supported by data and he as not a fan so I may be wrong unless he has changed his mind.

I am looking forward to talking to Shannon. I must admit finding a doctor like this over the internet is odd. I mean I don't know who anyone is here or why they would be recommending someone. I don't say that to be challenging just general and I think wise skeptical caution.

I just only hope I am not screwed up beyond repair from the previous three. I am at a top center, I get that may not be enough now but hopefully nothing crazy has been done yet.



Edited 1 time(s). Last edit at 08/09/2017 12:16PM by Fibrillator.

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Fibrillator
To be clear I never stopped Flecainide until this past weekend...

Okay, maybe I misunderstood my doc. When running through options, I thought he said Flec had to be stopped 1 month before a left atrium ablation, and then never restarted. Maybe he uses a different technique than your doc does.

Anyway, I've only been on Flec a short while. An event monitor is tracking its performance for doc.

I've always wondered about that. Mine does not stop the Flecainide up to ablation, I would think it would make sense intuitively. I asked years ago and to be honest I don't recall the answer but it was clear they had been asked before at least. After ablation they keep me on for 3 months and then try to stop.



Edited 1 time(s). Last edit at 08/09/2017 01:34PM by Fibrillator.

I spoke with Shannon and going to work on getting a Natale consult. I cannot express how helpful and selfless Shannon was even in calling me. To take your personal time to help a stranger in need for what 5 hours of talking? Unreal! Thank you.

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Michael777
Okay, maybe I misunderstood my doc. When running through options, I thought he said Flec had to be stopped 1 month before a left atrium ablation, and then never restarted.

You misunderstood something. It would be normal to stop any antiarrhythmic several days before an ablation, but not a full month (unless it's amiodarone, in which case it's more than a month). At a minimum, they usually want you to stop three half-lives before the procedure. Flecainide has a half-life of about 20 hours, so they would probably want you to stop it 3-4 days before. I've had a number of ablations and have been on flecainide several times, and 3 days is what I recall.

After the procedure, there's no reason flecainide couldn't be restarted. I think what he probably meant is hopefully the procedure will be successful and there will be no need to restart it.

I went back and looked, I was wrong, I too stopped three days before and started Flecainide back up day after each.

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Fibrillator
I spoke with Shannon and going to work on getting a Natale consult. I cannot express how helpful and selfless Shannon was even in calling me. To take your personal time to help a stranger in need for what 5 hours of talking? Unreal! Thank you.

Shannon is an amazing human being and patient advocate. He has done the same for me and so many others. The world is a better place because of him.

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Carey
You misunderstood something.

Okay thanks.

Fibrillator,

Glad you found the site and talked to Shannon. He is an amazing person and as Andy said, has helped many of us. Keep us posted on your progress.

Best,

C

Consult and CT on Sep 21st and Ablation with Natale on the 22nd. Can't wait! Shannon is my current hero.

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Fibrillator
Consult and CT on Sep 21st and Ablation with Natale on the 22nd. Can't wait! Shannon is my current hero.

Ask for the suite. Trust me, it will be the nicest hospital room you've ever had. :-)

Good luck!

Honestly I could care less if they put me in a shed for the night at this point if they solve the AFIB.

2 weeks post Natale ablation. Yesterday was first hit of a couple10 second or less what was probably afib but did not record. The Ablation experience at St. Davids was night and day compared to what I have experienced before. Dr. Natale knew what to do and where to go. He hunted my fib down and killed it on the table.

Time will tell of course but I feel I am in the right place finally if a touch up is necessary, fingers crosses though.