ICD + Ablation = No amiodarone?

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goodoldan
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ICD + Ablation = No amiodarone?

Post by goodoldan » November 9th, 2015, 5:41 am

Back in 2008 I was first diagnosed with VT/VF and received my ICD. I was not placed on any AAD's (anti-arrhythmic drugs) at that time, and over the following years had about 7-8 shocks (usually related to times of stress).

My ICD generator was replaced in 2014 without incident. The new St Jude unit included the "Merlin at Home" capability for remote monitoring. On April 2 of this year, I got a call from my EP's office at about 6:30 AM telling me that the monitor had detected some "strange activity" overnight and that I should go to the ER. Before I left home, I was shocked... and once I got to the hospital I was admitted and sedated in the ICU... and reportedly then received an additional 12 shocks before I was stabilized! When I "woke up" about two weeks later, I had been given the "loading dose' of amiodarone, and had also received an EP mapping and an apparently successful catheter ablation. I was discharged on a maintenance dose of 400 mg/day of amiodarone... which I quickly talked the EP doc into lowering to 200 mg/day.

In the 6 months since then, I've received no shocks and it appears that the ICD hasn't needed to intervene with any anti-tachycardia pacing (ATP), etc. My recent blood tests are starting to show some changes in my liver and thyroid numbers, although nothing earthstattering at this point... but side effects of the amiodarone nontheless.

Based on the papers I've read online, a successful ablation is generally regarded as a better, more effective treatment for VT/VF than amiodarone. When combined with the "backup" of the ICD, I'm having a hard time seeing the benefit of continuing to subject myself to the risks of amiodarone... since I've already got the "belt and suspenders" combo of the ablation and ICD.

Although the amiodarone does provide a third "layer of protection", I'm not sure if justifies the risks for any possible additional benefit... and I'm about to tell my EP at the next visit that I'm going off the amiodarone. Has anyone else been down this road? What is your EP saying?

Dan

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Ozchrissy
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Re: ICD + Ablation = No amiodarone?

Post by Ozchrissy » November 9th, 2015, 6:59 am

I am so behind you 200%, I really understand where you are coming from and I respect your decision immensely. I am similar with statins, I know not as important as Amidodarone, but I am still very protective of my liver and other organs. I don't take either of these. It was suggested by the 'experts' that have just done my new valve that I start back on statins, I don't think that they have ever seen such an assertive response from a patient, and once they both looked at each other, they proceeded without further comment. Need I say, we do have the right to make our own decisions, and as you have had a good run, with the other two procedures, so what have you got to loose. If everything falls apart, and you will know from your monitoring if it is heading that way, then just ask to go back on them. Otherwise why take the risk of all these other complications.
“I am not what happened to me, I am what I choose to become.” Carl Jung

Diagnosed with cardiomyopathy in 10/99
LBBB & VT diagnosed Feb 06
Guidant Biventricular Pacer ICD inserted Feb 06: Boston Scientific Incepta CRT-D inserted May, 2012
Oesophageal Cancer, 2012, Gall Bladder & Septicemia 2014 resulting in VFib and severe heart damage
Bare Metal Stent May, 2012 Mitral Valve replaced 2015
Meds: Entresto, Bicard, Coralan, Eurtorxsiq, Frusehexl, Spiractin, Sigmaxin, Creon, Warfarin,
Appropriate Shocks for Ventricular VFib.

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ROBO Pop
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Re: ICD + Ablation = No amiodarone?

Post by ROBO Pop » November 9th, 2015, 10:09 am

Image I swear I thought that was Mrag

You overlooked the important part of this...how does it impact you personally. Rather than dictate to your doctor, you maybe want to have a discussion with him on why you are still on amio, what the impact is with and without, and risks. I have heard no end of doctors ask why I am on the treatment regimen I am. Some are even outraged that my Cardiologist has not put me on a standard treatment. Those same doctors cannot comprehend how I am still here...You are an individual don't just assume that what you hear or read is directly pertinent to you.
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Suzanne
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Re: ICD + Ablation = No amiodarone?

Post by Suzanne » November 9th, 2015, 11:26 am

I too think you should have a discussion with your EP. Even if you value his/her opinion, you can still decide what's best for you, in the end. At least you'll be making a more informed decision.

I would be thinking the same as you, as to why you're still on amiodarone, I would want off it as well. You're EP must not feel confident that your ablation was 100% successful? Whatever, I would certainly want to try without.
goodoldan wrote:Based on the papers I've read online, a successful ablation is generally regarded as a better, more effective treatment for VT/VF than amiodarone. When combined with the "backup" of the ICD, I'm having a hard time seeing the benefit of continuing to subject myself to the risks of amiodarone... since I've already got the "belt and suspenders" combo of the ablation and ICD.
I've heard that, read that and believe that!!
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goodoldan
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Re: ICD + Ablation = No amiodarone?

Post by goodoldan » November 9th, 2015, 12:45 pm

I suppose I thought it went without saying that there would be a discussion... and I assume that the EP might be defensive about his position to put me on amiodarone in the first place (since he also did the ablation during that same hospital stay). I'll of course listen to what he has to say... but it's going to need to be a very compelling argument to keep me on the amio.

Dan

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gijss
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Re: ICD + Ablation = No amiodarone?

Post by gijss » November 9th, 2015, 1:03 pm

Dan,
In jan 2010 I had a VT ablation, as it was only partly succesful followed by another one in April 2010. Based on the EP study my EP did immediately after the ablation, while I was still on the table, he was convinced he got the right spot. I used Sotalol, the kid-brother of Amiodorone, which I could stop taking immediately.
Since then zero incidents, so my EP was right :D :D P

I must add that a friend of mine had a VT ablation last July. His EP said he expected problem solved, a few weeks ago my friend was shocked by his ICD and next shocked as his EP put him on Amiodorone.

I think is is worth the risk, but discuss with your EP why he decided so. No Amiodorone is a quality of life issue. 'Better safe than sorry' is not the right direction I think.
My name is Gijs but in English you can call me Gilbert as this might be easier te remember :-)

SCA Nov 13, 2004, shocked Sep 2 (2x) & 5 2005, Dec 31 2005, May 20 2006, Dec 29 2008, Oct 31 2009 and April 6 2010 (3x). 'Repaired' by epicardial ablation April 16th, 2010.
First ICD Guidant Vitallity, second (May 16, 2012) Boston Scientific Energen ICD

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goodoldan
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Re: ICD + Ablation = No amiodarone?

Post by goodoldan » November 9th, 2015, 1:28 pm

gijss wrote:Dan,
In jan 2010 I had a VT ablation, as it was only partly succesful followed by another one in April 2010. Based on the EP study my EP did immediately after the ablation, while I was still on the table, he was convinced he got the right spot. I used Sotalol, the kid-brother of Amiodarone, which I could stop taking immediately.
Since then zero incidents, so my EP was right :D :D P
My doc did an EP study right on the table same as yours did.... reading the operative report, it sounds like he was pretty thorough and did a good job of "testing" his work. I'm certainly not looking to get shocked again, so if he can convince me that I should stay on an AAD I'd try to opt for the Sotolol as well (I was on that a few years ago for a bit) rather than the Amio. Only problem I have is that my BP is naturally pretty low, and the beta blocker component of Sotalol limits the dose I can take. But it does get to be a belt and suspenders (and Pampers) level of redundancy after a while... where the ablation is now considered to be the "gold standard" followed by an ICD and then finally one of the AADs.

Dan

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mrag
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Re: ICD + Ablation = No amiodarone?

Post by mrag » November 9th, 2015, 5:37 pm

IMHO, the reason you have an ablation is to get off amiodarone (or any of its incestuous cousins). Now not everyone is eligible for an ablation (polymorphic vs monomorphic, yada, yada) and not everyone gets a successful ablation the first time which is why it is critical you start the ablation process with ONLY the most experienced and recognized EP within 500 miles of where you live. You want to optimize your odds.

Now that being said, does the world end if you get a shock here and there? That's why we have ICDs because we have hearts that can go into funny rhythms. And ICDs are supposed to shock, it's why they are called gd dm frekin ICDs.

So, if I'm getting 6 shocks every three days, I'm getting an ablation even if I have to do it myself. But what if I'm getting 1 shock every three/four years? I'm not sure I would do anything let alone dose up on amiodarone.

Is anyone still left reading this and getting my drift?


In jan 2010 I had a VT ablation, as it was only partly succesful
Is that anything like being partly pregnant?
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ricatlga
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Re: ICD + Ablation = No amiodarone?

Post by ricatlga » November 9th, 2015, 6:13 pm

When I first received my ICD I was dosed up with Amiodarone and then dose lowered. But a year later my at home EP said you're too young for amiodarone and swapped me to Sotalol. However, about every 6 months I would get a shock. After the last time, the EP said time to try and ablation. He said it was successful and at the 3 month followup dropped me off the Sotalol. I've been shock free for the past three years.

I'd have the conversation with the EP as to why he would want you on Amiodarone if the ablation was successful.

Regards,
Raymund
Replaced ICD 8/30/18 with Medtronic Visia AF SureScan MRI ICD
Ablation May 2012 - Sotalol discontinued in September
VF unknown cause 1/19/2010, Medtronic Secura-VR 1-22-10
Mitral valve repair Dec 2007

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Re: ICD + Ablation = No amiodarone?

Post by gijss » November 10th, 2015, 10:44 am

mrag wrote:
In jan 2010 I had a VT ablation, as it was only partly succesful
Is that anything like being partly pregnant?
No, not like partly pregnant. My EP estimated 1 event per 2 years. Before the partly succesful ablation I gad had 3 events in 3 months. When I came back in April he said I just had bad luck. "In a lottery you can get the million the first time while stats say chance is one in a thousend years". But adding I could stay for a new study.

in terms of pregnancy: Guess you better compare a partly succesful ablation with getting pregnant at 42 (for a woman) :D
My name is Gijs but in English you can call me Gilbert as this might be easier te remember :-)

SCA Nov 13, 2004, shocked Sep 2 (2x) & 5 2005, Dec 31 2005, May 20 2006, Dec 29 2008, Oct 31 2009 and April 6 2010 (3x). 'Repaired' by epicardial ablation April 16th, 2010.
First ICD Guidant Vitallity, second (May 16, 2012) Boston Scientific Energen ICD

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Re: ICD + Ablation = No amiodarone?

Post by 4EverHopeful » November 11th, 2015, 11:30 pm

I agree with the others, ask your EP why the Amio is necessary. I am on 200mg per day, and have been since my failed PVC ablation back in November of 2012.

I haven't experienced any VT/VF just PVCs, but the PVC were enough to interfer with the resynchronization therapy that my CRT-D was trying to accomplish that my heart was continuing to stay between EF 20-25%. My EP was talking heart tranplant if they soon didn't see any response from the therapy.

It was a last resort (and yes Al, my EP is experienced in ablations:). I asked if I could go off it sometime in the future and expressed my concerns of the risks. He said we would see and maybe.

Fast forward as of last February's echo my EF had increased to 30-35% and have been very stable for 3 years. So last August I told EP I would really like to stopped taking Amio. He was hesitant but since my heart had improved he agreed to try for 6 months since it takes that long to leave the body.

Yesterday I had my three month interrogation and pacing is staying at 99% which means no PVC interruptions. When the PVCs were numerous my pacing stayed around 87%, their goal was at least 92%. This allows the therapy to work at it's maximum. The real test is next February when I have my annual echo and EP visit, hopefully will still be PVC free.

So the whole point here is that the "why" for me is that even though PVCs are generally not a concern, they were in my particular case, interfering with my treatment. Yeah the Amio damaged my thyroid and now am on thyroid meds, but no other side effects. Also my EP said 200mg is considered a low dose, if that gives you any peace of mind. So ask him the "why" then determine if you think it's worth the risk. That's my two cents worth! dancee
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Re: ICD + Ablation = No amiodarone?

Post by natashal » April 6th, 2016, 9:19 am

I am 40 years old and I have been an avid athlete, runner, cyclist since I was 10 years old. had sustained VT two years ago. Unknown cause. Docs then (not my current doctors) tried an EP Study and could not induce (I was totally out at the time), ICD implanted and placed on 80 mg of dreaded Sotalol. It made my life hell. Running was difficult! I hated the medication and had been on Sotalol for 2 long years. I pushed my previous doctor to do an ablation but he is very pro medication and said "no".

So I started researching the best of the best in the area of VT ablations. I live near Boston, MA and I kept coming up with the name Dr. Stevenson at Brigham and Women's Hospital. Well, three weeks ago I had a successful ablation! With my current ablation, I was not sedated! Dr. Stevenson was able to find the trigger point and put me into VT within 15 mins! They then had me in and out of VT to map it, it felt bad but was worth it! Then they sedated me fully and had to go on the inside AND outside of my heart (groin and chest) - he could NOT induce VT at the end.

Right now, in my 6 week recovery, all I am allowed to do is walk because the heart needs time to heal, which is ok with me and well worth it and as I previously stated am on 20 mg of Nadalol which is a less potent beta blocker than Sotalol and a lower dose - but still I do not want to be on meds like this the rest of my life - at 40, that is a long time. In 2.5 weeks, I have my stress test, no meds during the test, then hopefully come off altogether and start running.

I do not plan on being competitive anymore, but happy to run and workout without feeling like I am pulling a caboose (as I felt on the Sotalol) - it made exercise miserable.

I hope to come off all medication in 2 1/2 weeks and not have any events! Looking forward to running again soon!

Hope to hear from those of you with a successful ablation who are active and not on meds!

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