post ablation

Hi everyone,

I just have a couple of questions. On wednesday I went in for a cryoablation to try to get rid of my accelerated junctional rhythm. Before the ablation my dr told me that he would try to fix it as long as it didn't give me heart block or wipe out my av node due to my age ( mid 30s) he didn't want to increase my risk for heart failure so he says. Everything went good during the surgery, they were able to get some areas but when they started to freeze the area (which was the bad area) almost right on top the av node it started to give me heart block so he backed off. This does not make me happy as I have still had some episodes of the juntional. He said that he was hoping he would have at least slowed it down enough that he could over ride it with the setting of my pacemaker which is a double chamber. I have not talked to him yet as I don't go back for about 5 weeks for my post op, but this really bothers me that I went through this whole procedure again (this was my 4th) and it still has not fixed the problem. He found the area that needed ablated but chose not to cause he didn't want me pacemaker dependent. Does anyone else think this is crazy? It is just going to continue to give me problems and he knows that its still there. I am really needing some advice here on what I should do. I have made an appt with another ep dr just as a consultation, I have talked with this dr before at the hospital but just not as a patient. He told me that if I ever needed him he would be more than happy to treat me and he knows of all my history. I feel a little guilty in doing this but I'm very irritated right now!!

Any opinions or advice would be greatly appreciated!

Thanks Holly

7 Comments

Do what you have to do

by ebfox - 2013-03-22 07:03:43

Hi Holly,

You have acted very reasonably in this case. There is nothing wrong with going to a second doctor when the first one hasn't fixed the issue.

One thing, accelerated junctional is a complex situation (some others on this site will attest to that). It is to your first doctor's credit that he stopped when he wasn't sure about the outcome; he could have just plowed ahead and ablated God knows what. However, since he has had his shot (or sounds like several shots) it is totally reasonable for you to go to another EP.

You should not feel guilty at all. We all have to be our own best advocate-

Take care,

EB

Great EP!

by golden_snitch - 2013-03-23 04:03:33

Hi Daisy!

It's never wrong to get a second opinion. I switched EPs after about 12 years, because my EP was no more help at all.

However, knowing your EP's name, and knowing that he has an excellent reputation, in my opinion he has nothing but your best interest at heart. He has something in mind that you probably still don't fully get: the risk of heart failure and Afib due to permanent right ventricular pacing. Apparently, he has seen many patients with this problem, otherwise he wouldn't be so extremely careful not to destroy your AV-node. Lots of people underestimate that risk, but he doesn't. That's great!

I am pretty sure that my EP would have made the same decision as yours did, and stopped the procedure. Actually, he did in my case: He went in in July 2012, my 7th procedure, to take a look around. During this procedure it occured to him that eventually nothing but an AV-node ablation would help. And although we had talked about this before the procedure, and I had agreed to an AV-node ablation, he didn't go ahead. He consulted with his whole team, and most of the other doctors said that they'd have me try Sotalol before doing an AV-node ablation, because I'm so young (31). So, he stopped the procedure, and I was put on Sotalol for two months.

Why my EP decided to ablate the AV-node after those two months? I'm paced on the LEFT side with epicardial leads on the left atrium and left ventricle, but the heart failure risk is associated with RIGHT ventricular pacing only. In addition, we were dealing with several arrhythmias, junctional rhythm being just one of them. Last but not least I had already had 7 ablations and had been on every drug that's on the market.

Apparently, your EP has the feeling that you are not running out of options, yet. Maybe he also feels that, if he could only get you through another year or two, the technological or pharmaceutical process will open some new doors. I think he's acting very responsible.

I know that you don't even want to give Amiodarone a try. However, before you go for an AV-node ablation, you should have given every drug a try. And I know quite a few success stories with regards to Amiodarone. A friend of mine, who's 45 now and has two sons, has been on it for more than ten years - it still controls his arrhythmias very well, and he has absolutely no adverse effects, except for a sun sensitive skin. Another friend took it for eight years (in her thirties), and it bought her those eight more years before she needed to have an ICD implanted.

So, as patients we have a responsibility, too, to do our best, and if that includes trying Amiodarone, then so it be. I'd say, if you can be stubborn about Amiodarone, then why can't your EP be stubborn about not destroying the AV-node?

I know that this is not what you want to hear, but it's my two cents worth.

Best

Inga

Thanks Inga

by ebfox - 2013-03-23 09:03:33

I was hoping you would chime in here because I knew you were fighting a similar battle and accelerated junctional is a bear to wrestle with. The fact that you know Holly's EP is pretty remarkable-

Thanks again, and the best to you both-

EB

Choices

by donr - 2013-03-24 11:03:16

Daisy: I've read all your posts & comments - along w/ Inga's comments.

Before you draw a line in the sand, mud, dirt or solid granite about Amiodarone vs AV ablation, consider one more aspect of the choice: When you opt for the ablation, it is an irreversible decision - you cannot be unablated!

At least trying the Amiodarone, you can monitor the condition of all your organs & get a precursor that you are going to have problems before they become irreversible. This just takes some cooperation from your EP.

I don't claim to be a hero, but my EP gave me a choice - try Flecainide for my arrhythmia problem before going for an ablation, or essentially, he would not do it. Flecainide has a terrible reputation for side effects - but for me it worked. He monitored me closely for il effects - & still does. It's now been nearly 4 yrs & still no bad effects.

IMHO, you are missing a bet by not trying the Amiodarone.

Don

Inga

by daisy0388 - 2013-03-24 12:03:48

I am fully aware of what my dr is trying to do for me and I appreciate it but there are lots of people that are pacer dependent that live full lives and actually feel good. I would like to be able to be somewhat "normal" by not going around feeling dizzy and short breath all the time. My husband will even go with me to the grocery store at times because just doing a small task like that will completely wipe me out. How is this any better then dealing with the fact that I would have to depend on my pacemaker? I also stand my ground with the amiodarone. I will not take that! Even if one person does fine with it I know there are alot more out there with poor kidneys and lungs due to that drug. My other organs are fine and I don't intend on possibly causing more issues that I already have. I had an ecg done at work yesterday and compared it to the one right before the surgery and it looks worse than before, not only with juctional but now looks like some kind of a block. I am taking all of this info with me when I have my consultation later this week. I figure one more set of eyes won't hurt.

Daisy...

by golden_snitch - 2013-03-25 09:03:41

Here's something you posted a while ago:

"When my dr went to new york he had 2 other drs pull him the side and told him not to do the av node ablation, that they had 2 similiar cases and the patients ended up feeling worse than what they did before the ablation so now he has put it on hold until he does some more research."

So, two more opinions...

Go for opinions until you find someone who's willing to do what you want. There are always some idiots around, like that doctor who suggested to a 24 years-old girl, after two SVT ablations, to ablate her AV-node. You want this ablation, you'll get it. Good luck!

Oh, and there is a difference between all those "simple" heart block patients being pacemaker dependent, and someone who started out with atrial arrhythmias and gets a heart block because of an ablation for junctional rhythm - whole different story.

I won't reply to your posts again. Already spent too much time on this, and you don't seem to be really looking for input or advise.

Inga

Daisy

by scrappy12 - 2013-03-26 06:03:04

Before you make a decision I urge you to listen to the wealth of knowledge on this website.
Prior to my pacemaker being implanted I would have given anything to just be "normal", walk upstairs without getting wiped out and just work out like a normal 24 year old. We had tried almost every medicine there was, some twice and had multiple failed ablation attempts. During one my EP had to back off because he came too close to the AV Node. While he knew I would have been 100% OK with an AV Node ablation (or atleast I thought I would be at the time because of how frustrated I was), he did not proceeed because he did not want to make me pacemaker dependent at such a young age if it was not absolutely necessary. At the time I was furious and disappointed, I begged for him to just do it. Looking back I am extremely grateful for such a thoughtful doctor who cared about me long term, not just the immediate future.
There is an amazing amount of knowledge on this website. Posts from people like Inga made me realize that sometimes you have to take a step back from being in the middle of a situation and think long term. Right now you feel you are at the end of your rope but five years down the road, will this decision be the same? Why not give every single option a try before something so permanent with documented chance of heart failure? I appreciate the people who couldn't go back, who couldn't make that decision the way I could making me think twice (whether they even realized they were helping me or not).
Best of luck in whatever you do decide.

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