update for av node ablation

Went to the dr today to have our little chat, lets just say i'm not a happy camper! 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. I'm very frustrated as I just had a double chamber PM put in specifically for this procedure. When he did my device check I was pacing 82% in the upper chamber and 3% in the lower. He said that I shouldn't be pacing at all in the ventricle so there might be something else wrong so now he has me on a new event monitor, one that uses cell phone towers to automatically upload info so he can try to find out more in depth in whats going on, if its still my accelerated juntional rhythm or if something else is also going on. I go back to him next thursday to go over the information. He said that hes not saying he won't still do it but he wants to be more comfortable with it first. I am about at my wits end, I just want it fixed!! Tell me if I'm wrong but if I was 100% paced in both nodes wouldn't it correct any other arrythemias? Any help is much appreciated as I don't know what to do!!!

9 Comments

USA

by daisy0388 - 2013-01-03 07:01:04

I am from Indiana. You can look him up. His name is Dr. Prystowsky and he works at the St. Vincent Heart Center in Indianapolis. He really has been great I'm just tired of feeling horrible!! I would still highly reccomend him!

Thank You

by daisy0388 - 2013-01-03 07:01:09

Thank you angrysparrow, yes I feel like he does acutally care about me and that I'm not just a number to him, he even told me that today. He said he could easily go in do the surgery and what ever happens happens but he doesn't want to do that to me. I have all along been a challagne to him and he has never had a patient like me thats why he is so confused on what to do and and what not to do. I think the thing really bothering him now is as to why my ventricle is pacing when it shouldn't be...he said that makes no sense. I am going to try to put my "big girl panties on" at least for the next week and see what we find out from my monitor. I'm just so tired of not feeling good and just when we think everything is fixed its not, up comes another arrhythmia causing me problems. Its funny how they can put a man on the moon but can't figure out the heart!

Info on my DR

by daisy0388 - 2013-01-03 07:01:45

Look at his credentials they are amazing!!

http://www.forbes.com/profile/eric-prystowsky/

Let me know what you think!

Holly

Wait Until Your Doctor Is 100% Sure

by Many Blessings - 2013-01-03 11:01:27

Hi Holly,

Please, please, please wait until your doctor is 100% sure that the AV Node ablation is what you need to fix your problem(s) or make you feel better.

I had a CRT-P with AV Node ablation done in April. I was told before my procedure that it would not fix my heart problems nor would if fix my A-fib. It didn't. My heart rate is much slower because of the PM setting (80-150) but my A-fib is still there. The cardiomyopathy with heart failure is still there. I just didn't have any other choice but to have it done.

There are a LOT of issues that come with having an AV-Node ablation, so don't think it's a "perfect fix". You really have to look into this before deciding upon having it done. And, if your doctor has hesitations, go with his gut! Please! (Angry Sparrow, help me out here! LOL!)

I have said this before... I am grateful that my heart failure "symptoms" have improved from having this done, and my EF did to up. But, I now have other symptoms that I did not have before. You're 100 dependent, 100% paced, and you cannot survive without it. There is no turning back once you have your AV-Node ablation done. You can't say "I don't like this" and have it changed back.

There are pros, but many cons to having this done. Do your homework, as questions, search this site, Google to your heart's content. Just learn all you can. And, hug that doctor of yours for wanting to wait until he's sure!

Oh, what is your EF right now? How fast has it dropped over the last year or last few months? Do take this into consideration as well.





Agree

by golden_snitch - 2013-01-04 03:01:01

Hi Daisy,

I agree with this others - wait until your doctor is more comfortable with the AV-node ablation. I have come across his name quite often, he seems to be very competent. My EP discussed this step, the AV-node ablation, with several EPs in and out of his clinic, too. Even after everyone had reassured him that this was the route to take, he was worried that I could be doing worse afterwards. He admitted this at my three months check-up after the ablation, and you could see how very relieved he was that I'm doing great.

Believe me, with both nodes ablated, you can still run into loads of problems:
1. Atrial tachycardia and mode-switch: Could be that, if you should experience atrial tachycardia again, and the pacer switches into VVI mode, that you do not tolerate this ventricular pacing only. You'll lose AV-synchrony, lose the atrial kick, some patients do not tolerate that well.
2. Could also be that the mode switch doesn't work, because the pacemaker detects atrial tachycardia only at a rate higher than the upper programmed pacer rate. So, any tachycardia that runs at a rate below this upper rate limit, will just be tracked by the ventricular pacer lead --> you'll have tachycardia, although both nodes have been ablated.
3. Long-term ventricular pacing: I think I have explained this often enough, but again, ventricular pacing can lead to onset of heart failure and atrial fibrillation.
4. Junctional and ventricular rhythms: Even after an AV-node ablation, it can still happen that foci at the junction of the atriums/ventricles or in the ventricles act up. A friend of mine who had an AV-node ablation many years ago, is now dealing with loads of PVCs and ventricular runs.

Regarding the ventricular pacing: Why is the ventricular lead even switched on, if you haven't had the AV-node ablation, yet, and have never shown any slow AV-node problems before? What is the programmed AV-delay? 3% of pacing is not too bad, and can easily be caused by an AV-delay that is programmed too shortly. I'd not expect that there is something seriously wrong. I know that we are often told that our pacemakers are "on demand" pacemakers, but the fact is that if you put a DDD pacer in a patient who only has sinus node issues, this patient almost always ends up with some percentage of ventricular pacing. That's because the settings are not optimized, like the AV-delay I mentioned. Doesn't your pacemaker record an ECG of the episodes when it paces your ventricles? Before my AV-node ablation, when I had intermittent heart blocks, my pacer recorded nearly every episode. That was great, because we knew exactly why I had ventricular pacing, without needing to do a holter monitor.

Best wishes
Inga

Another Agree

by ebfox - 2013-01-04 08:01:21

Hi Daisy,

It sounds like you are jumping back and forth from junctional to sinus. I have friend that is in the same boat and she is very frustrated. It is a very compicated situation to deal with; I know that has to be difficult for you but like the others said, I think the fact that your doctor said "hold on a minute", well, we don't always get that out of our doctors.

An AV node ablation is the last resort, don;t do it until you are sure that is the best final option.

I would offer my prayers for your strength and for the doctor to come up with the right solution for you.

Please let us know how it goes-

EB

Amen to all of the above

by Zia - 2013-01-04 10:01:32

Too many docs would go ahead and do the procedure "because they can". Once it's done there's no going back, so bless him for his caution.

Add

by golden_snitch - 2013-01-04 10:01:52

Have to add: When my EP did the AV-node ablation, he was, as were his colleagues, convinced that it was my only chance to get better. Two months before he had done an EP study with an attempt to ablate, but the study showed so many different arrhythmias that ablating one by one would not work; this was not only about junctional rhythm. I had already had six ablations, had tried all drugs available, except for one: Sotalol. My EP was ready to ablate my AV-node right away, but his team - he's the professor, the big boss - said that I should try Sotalol first. So, that's what I did, but unfortunately I didn't tolerate it at all.
Before my EP did the AV-node ablation, he had also discussed this approach with a former EP of mine who had done my first three sinus node modifications, but who now works in Italy. They were both convinced that it was the route to take. I would have not agreed to have the ablation done, if that hadn't been the case. We all knew it was a chance, but no guarantee.

I know that we, the patients, often think that it's impossible for us to tolerate this and that. We want a solution, we do not want to have to tolerate anything. I was like that in the beginning. But as soon as you begin to realize all the consequences an ablation like an AV-node ablation can have, you have to think this over. You have to find out for yourself what you can actually try to live with, and what is unbearable. And sometimes it helps, if a doctor forces you to test your boundaries. In the four years before I had the AV-node ablation, I tolerated at lot of symptoms I had never thought I'd be ok to live with; ten years ago I would have given my EP hell for making me go through this. But once he kind of forced me to try and live with them, I found out that this was possible. I did my Master's degree at that time, I started to work, I went through four pacemaker surgeries. It was a fight, but it wasn't impossible.

Best wishes
Inga

Bad day today

by daisy0388 - 2013-01-04 10:01:52

Thanks everyone for your replys..today at work I had a pretty rough day, had lots of episodes, at one point I was almost ready to pass out, had double vision,heart was pounding, and my shirt was soaked with swet..one of the nurses ( I work in a hospital) took my blood pressure and was 148/98 which is very high for me. I managed to lay down for a bit and my pressure slowly came down and the rapid heart rate slowed. I was able to record everything with my event monitor so I will be very interested to see what shows up. Anybody else have any idea what could be causing this?

EB..I'm sorry that you have a friend going through the same thing, it is horrible and very frustrating!! Please let me know if she is able to find out what is going on with her and maybe that can help me.

Holly

You know you're wired when...

The mortgage on your device is more than your house.

Member Quotes

We are very lucky to have these devices.