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Cardiac Ablations


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Hi again

Does anyone know if cardiac ablations hinder your progression with POTS? For example if your nevers were damaged by a virus, but you were mistaked to have IST and had an ablation, do you still have a chance of recovering? Or does the ablation make it so you cant recover? I since the ablation has nothing to do with the nervous system, I wouldnt think it would but ya never know. I had one done last Febuary, and it didnt help nor hinder me currently. My EP ablated very little as this is his way of avoid ablating too much. Thanks.

Tasha

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Patients with POTS tend to do poorly with ablation. If you search the forum on this topic, you can read up on the issue:

http://dinet.ipbhost.com/index.php?act=Sea...ghlite=ablation

nina

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Guest GayleP

Not sure an ablation would make things worse but it most likely won't make things better re: heart related issues.

I just spoke to my cardiologist about this a few weeks ago. He had mentioned doing an ablation on me at my last appointment several months ago. He'd only do it if my arrythmia got worse.

I called him a few weeks ago because it was my undestanding that if my arrythmia was because of dysautonomia then an ablation would be useless because then it's the brain messing up the heart. Not an issue with the heart itself. That's of course assuming that it's dysautonomia related which it's hard to know 100 %.

He agreed, that in my case an ablation would probably not help.

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Hi again

I since the ablation has nothing to do with the nervous system, I wouldnt think it would but ya never know. 

Hi,

Ablation for IST and AF are still really in the experimental phases we know that there are autonomic nerves located near the right atrium and particularily with IST as the SAN is the problem (depends on your school of thought I spose) it is speculated that part of the damage from the RF or cyro energy is actually done from damaging these autonomic nerves and thus rendering them unable to deliver the messages or derangement. So in a way it is all sort of connected.

An ablation for IST is only really a band-aid fix as you still will have the dysautonomia it just won't or shouldn't if successful affect the SAN anymore because you have caused either enought damage to it or total anhilation.

Hope this helps a bit,

Naomi

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Guest tearose

Just my two cents...

The field of dysautonomia is still so new. There is much still unknown. A lot of the early ablations let to many dysautonomics needing pacemakers. Fortunately , I chose not to have an ablation in my early days...my EP now says it would have led not only to a pacemaker in my case, but probably an implanted defibrillator as well!

The reason the EP didn't know the negative side effects in 1994-1995 was because the extensive studies on small fibre denervation through cardiac MRI and cardiac PET scans studies were not available then. In fact not until 2000-2001 did PET scans show much of the denervation that can be in the heart!!! So, the technology is still developing that may eventually help in treating us. We can hope that we will improve...however, I would move cautiously when it comes to any surgery or invasive procedure that may not be reversible in case it would do permanent damage or make me unfit for the future real "fix".

good luck on your search, tearose

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Just my two cents...

The field of dysautonomia is still so new.  There is much still unknown.  A lot of the early ablations let to many dysautonomics needing pacemakers.  Fortunately , I chose not to have an ablation in my early days...my EP now says it would have led not only to a pacemaker in my case, but probably an implanted defibrillator as well!

The reason the EP didn't know the negative side effects in 1994-1995 was because the extensive studies on small fibre denervation through cardiac MRI and cardiac PET scans studies were not available then.  In fact not until 2000-2001 did PET scans show much of the denervation that can be in the heart!!!  So, the technology is still developing that may eventually help in treating us.  We can hope that we will improve...however, I would move cautiously when it comes to any surgery or invasive procedure that may not be reversible in case it would do permanent damage or make me unfit for the future  real "fix".

good luck on your search, tearose

I'm with you tearose,

I am a clear example of what can happen my EP was absolutely 100% that I only had IST and due to the resting rates of 150 we decided together to try for an ablation as I was med resistant and now after having had 2 procedures done and still no cure of IST but the development of further dysautonomia symptoms I would be very careful of which ever treatment option you decide.

My damge is permanant I am lucky that I don't have a pacer but with the amount of damage that we did this may well be the case for me. I am now unable to have any form of medication treatment for my IST and most probably whatever else we find be it POTS or whatever.

I was inpatient and young (still am but a year on changes you) I went from being active and fit to doing nothing and not working quiting uni and I just wanted it fixed and considering we thought we had our diagnosis correct we went for the invasive option as meds did nothing for me. I can't go back but I feel if these newer symptoms were going to develop anyway then I wished we would have waited a bit longer.

Naomi

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Guest tearose

I am sorry for that Naomi, but you made the best choice you could at that time! Please don't allow yourself to dwell on what might have been. You probably are much more selective now in all you do! At least you have an idea of what you need to do now...get the best physicians and get the most out of your body without wearing it out!!!

By sharing your story here, maybe someone like Tasha, or someone else, will have an easier path to better health.

Thank you for sharing Naomi. Glad you are here!

How are you doing Tasha? best wishes, tearose

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Hi Naomi,

Wow I remember I was talking to you on the IST board a few months ago. Wow I cant believe that this has happened to you! I feel so horrible. These types of illness should happen to murders and child molesters...not members of society that can actually contribute something to this world. Anywho I decided not to have another ablation, thank god. Something in my gut told me not to do it. My parents also were against it, and I really trust my mom intuition. I guess I can say that my failed ablation was really a success. My EP barely ablated anything as that was his method; he is very frugle the first time, and if there needs to be a second surgery, so be it...its better than a pacemaker or junctional tachycardia! I'm sorry that this has happened to you. Have you ever been told that you might still recover from whatever is causing the POTS, and then your heart might be ready for a pacer and then; well you can get on with your life? As for me, I am still trying to figure out secondary causes to my POTS. I am going to have an MRI to look for a chairi malformation as I do have a lot of neck/back of head pains, and a history of weird neck problems in my family, so maybe an answer will lay there. I really hope so as this is a possible cause of POTS that can be cured with surgery. Not fun but better than life with POTS. Wow I am still trying to express my sympathoy for the successful ablation. Too bad that one was a failed attempt too. Its funny how a failure can still be a success. I hope you sue that doc outta his pants. There is another memember on this site: goldicedance I think that has the same problems as you do. The only difference is she has a pacer from the whole experience. Maybe she can help you out more than I can. I know it is hard for you, but try to keep your chin up and hope the dysautonomia goes away...do you know how you got POTS??? Virus, family history, preggers??

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Hi Tash,

It's funny cause I was wondering if it was you too,lol.

Nar don't feel bad I believe that we are only trhown things in life that we can handle, did that come out right,lol.

I'm glad that my EP cancelled the 3rd one cause not only would I have probably ended up with a pacer but also have more dysautonomia aswell so for now atleast I don't have to worry about that.

I don't blmae my doc he is wonderful to me he lets me ring him up and speculate and throw my wild theories around. And honestly I didn't have the symptoms I'm getting now then so It's nots really a bad thing just a different challenge for us to solve,lol.

We don't have a definate diag of POTS or whatever I spose thats what the neuro will do,hopefully. I am taking the vit B for the fatigue which is helping but you still have some bad days,lol.

I hope they find out whats causing your troubles and then find some way of giving you relief. It'll nice to catch up again.

Naomi

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