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erikainorlando

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Hi All,

I went to see my favorite EP this afternoon. My doc knows alot about POTS and treats many POTS people. So he was looking at the resutls and said he sees a misfiring in the artium. He thinks he can make me feel better with an ablation. I asked if then perhaps I didn't have POTS afterall (which we know if not the case as I always have a hr of 30+ when I stand)...He said he thinks there may be a few things going on but thinks that an ablation will help me. I got so excited....but then I started thinking of all the posts on failed ablations etc.

Help....any input would be so appreciated.

Thanks,

Erika

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Guest tearose

Oh no!!!!

Please get a second opinion. I too was told to consider having a little misfire zapped but something did not feel right about it. That is when I went to Mayo...they said it would have been a major wrong move for me because the misfire is not always happening and with the POTS better managed, I would not suffer the misfire.

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Definitely get a second (maybe even a third) opinion. I had undiagnosed POTS and had an ablation. It was the worst decision I ever made. Prior to the ablation my POTS could have been easily managed with medications had my EP had a clue about POTS. I became so much worse after my ablation and had full blown POTS. It's taken a long time to get back to a good place. It is a decision I will always regret but I didn't know that I had POTS and I was told the ablation would make all of my symptoms go away.

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It all depends on what part of your heart you are having ablated. You should never have your sinus node ablated which is where POTS comes from. I had SVT and had ablation done on it a year and a half ago and it helped me tremendously. My EP also trained with Dr. Levine who specializes in POTS so he knew exactly what he should and should not do. With me my SVT would happen at night when I was laying down so we knew immediately that it was not POTS. I think second opinions are a must. But not with someone that is not versed in POTS.

Worththewords: I am curious to know what part of your heart you had ablated. Was it your sinus node?

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Ramakentesh - I think that it would be more accurate to say:

"Most patients who get ablation FOR POTS are WORSE afterwards rather than better"

It really does depend on what part of the heart is to be ablated (leave the sinus node alone!!!) and why. The study that showed that ablations were bad for people with POTS was done when they were trying to use ablation to "cure" the sinus tachycardia that is part of POTS. If someone has a separate (non-POTS) rhythm problem that can be helped by ablation then they should still think carefully and see an EP who is experienced in POTS but should not automatically rule out an ablation.

Flop

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ramakentesh: I am not sure about all his patients. He did tell me that mine was due to deconditioning ( I got it while on Bed rest with a pregnancy) but, i think that I had it long before that and pregnancy is just when it chose to rear it ugly head with a vengeance. Pretty sure that I have MCAD too. I would have episodes that sent me into Anaphylaxis when I was younger. It was never the same trigger.

As for Dr. Levine, I have seen him a few time the most recent when I acquired a tremor a year and a half later he had to admit that he did not think it was from deconditioning anymore and that is was just time to let it go. He thoroughly pissed me off. I have not been back since.

My EP was trained by him but is wonderful although he will completely admit that he does not know everything.

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Hello - I have POTS and also atrial fib, atrial tach, SVT, and IST. My EP did an EP study to try to identify the area of my heart that was misfiring but literally every circuit was affected so my EP was unable to do anything. I went into afib during the procedure and wouldn't go back into rhythm and had to be shocked a couple of times. Since then, my atrial arrythmias have gotten worse (that was about 5 years ago). I also have bradycardia now pretty frequently. My EP has talked about ablating the sinus node and putting in a pacemaker but made it clear that it wouldn't help the POTS. Neither of us have felt comfortable moving forward with this decision but it is starting to become a "pick the worse of two evils" path due to the inability to get the arrythmias controlled. Now, I go into afib every time I have an urgent bowel movement (which is frequently since my gall bladder surgery and my bowels won't get back to normal) and under stress. Definitely get a second opinion and do the research....you may get relief from your atrial arrythmia if that particular circuit can be identified but as the others said, ablating the sinus node is risky and success is definitely far from guaranteed. Good luck - I know how hard it is to live with these arrythmias.....:angry:

aabriggs: I was not under the impression that the sinus node controlled POTS. I was under the impression from my Drs. that POTS was a brain issue with bad signals being sent to the sinus node from the brain (the ans) but that the sinus node itself wasn't causing the POTS. I would be interested in anymore info you have on this...thanks!

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I just started researching ablations because I found out i had inappropriate sinus tachycardia in addition to pots and ablations are proposed treatments. What i've read is that ablations for IST are very successful in the short term but in less than a year the majority of people have all the symptoms back and sometimes they are worse then before the procedure. This is a sinus node ablation by the way. A women on here who just joined posted about having had ablations done that worked originally for her but then things were worse and her second ablation caused big problems. You can find her post and maybe talk to her about it.

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Daisy: Sorry I meant that your sinus node was the area of the heart that POTS tachy comes from. Not that is was the source of POTS. Yes, it is the ANS that causes it and many of us have other ANS issues as well.

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Thanks everyone! I always know where to come for imformatin.

Abbrigs - I sent you a PM...but how exactly did the ablation help? What are your symptoms now?

My EP says he leaves the sinus node alone with POTS pateints...I assume and am waiting to talk to him more that he is just focusing on the atrial tachycardia.

Erika

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HI there. I have had 2 ablasions in the past. The first one helped a lot. I no longer get HR in the 200, which is nice, I felt better then I had in a long time. I did not need any meds either. But after about 8 months, it started to come back. Fast heart rate, and arthymias. They decided to do it again. The second one didn't really help at all, and then I had a sinus node modification done. BAD BAD. I have had nothing but problems since. Everything has gotton worse. I did not have a POTS dx then though. For while there was talk of putting a pacer in, but he refuses now, saying it would help my HR but not the rest of the POTS issues. If you want to know more about the ablasions and such feel free to message me. Good luck with whatever you decide.

~Kelli

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