No PM yet...SVT, Heart Block, AV Node Ablation

I am a newbie and I do not have a pacemaker, but I have a feeling I'll be joining the club pretty soon!! I want to start off by saying that I am 22 and I have been having problems for a little over a year now. I was diagnosed with POTS and IST last June when I started passing out all over the place. I have always been in a sinus tachycardia or SVT. The SVT got pretty bad and I had a SA ablation last August which did wonders for three months and the lovely SVT came back. Starting around October I was getting these fluttery stopping kicking feelings to the point where I would curl up and scream, every time I brought them up I was told that they were PVCs and I can feel them now because I was on a calcium blocker instead of the beta blocker. Fast forward and now I have been flipping threw every sort of heart block and brachy......along with SVT. A few weeks ago I was flipping through both Mobitz and I was probably already in a 3rd for a few seconds. They didn't put a pm in my right then and there because they thought it was drug induced. So now I have been on no meds for 3 weeks and I just had a holter on again and now I have another event monitor on. The holter showed SVT at the highest rate of 200 and then a few hours later 2nd degree heart block, Mobitz I, lowest hr at 40.

So now they're talking about AV ablation and pacemaker dependent. I don't get it, I think I am too young for that and I will be scared shit if anything happens, I would have to live with escape beats so I can get into surgery in time. I was wondering if anybody else had this done at and their outcomes.

I also really don't know whats so wrong with a PM for the brachy, heartblocks. I think they rather try and fix everything wrong with me at once. Luckily I live right outside of NYC and my doctors and I have set up a bunch of second opinions for me. I have NYU, Cornell, Columbia and CHOP lined up for me.

Anything anyone could say would be extremely helpful! I have realized with being sick the best thing to do is talk to fellow patients...they understand where you're coming from!

5 Comments

AV node

by hzuz - 2010-07-01 02:07:10

Had a PM put in 6 months ago for related cause. But
two weeks ago I opted for AV node ablation, The meds were not taking care of my AF. I am now PM dependent - But so far I am feeling GREAT.

IST/SA ablation

by Janey L - 2010-07-01 03:07:44

Hi. So sorry to hear you are having so many problems. I too joined this club a few weeks ago as I may need a pacemaker soon. I have had IST since last March (2009) & all medications have failed to control it. Soon I am having a probable sinus node modification which, my EP tells me, puts me at a pacemaker risk. I was very interested to read that you too have IST (although I see you have POTS too, I don't have that) & that you had a SA ablation. What was that like? I read you said it worked for 3 months. I live in the UK. I am pretty scared about the procedure (due July 27th). I just wondered if you could give me any advice or info about it. I am 47. I hope all goes well for you.
Best wishes
Janey

Same Boat

by JustKristin - 2010-07-01 04:07:29

Hi!
When I read your post, it was like I was reading all about myself! I too have been put through the ringer with several different diagnosis (SVT, IST, POTS, etc). I had an AV node ablation three years ago, then was diagnosed with POTS, and started to feel crummy about a year or so after. My heart doc finally put another holter on me and it showed my heart slowing wwwwaaaayyyy down at night when I slept. I was soooo scared because I felt at the "young" age of 36, I should not even be thinking about a pacemaker. I have to tell you, it is the best thing I have ever done for myself. After getting the pacemaker put in, I was so anxious about it working properly, but you know what??? I started to feel GREAT! I had the energy I had before this whole mess started and even my color improved. I know that everyone is different, and I totally recommend you getting your second opinions, but getting a pacemaker for me was the greatest thing ever. They even implanted it under my left breast so you can't even see it! Much luck to you! Please keep us all updated.
Kristin

!!!

by jessimay - 2010-07-01 08:07:34

Oh man, I am so excited! I thought I was taking a long shot on here.

Janey, the ablation was nothing. They make you sleepy and poke two little holes into your groin area, a little bigger than IV, the tubes the use are smaller then angel hair pasta. When you wake up you just feel bruised. I was fine to go the next day....just no squatting or heavy lifting. I should also correct myself....they did a modification, where they ablate a small part of it, my doctor did not want to ablate the entire node.

Kristen, I can not believe it! Soooo nice to know that I am not alone. My doctors aren't so confidant about the idea of an AV node ablation and its a good thing. They have never done anyone younger than 50 and they don't feel right doing it to me. I have to respect that, so hopefully the Children Hospital of Philly will have an answer. I am actually in the hospital now and I will see whats going on in the morning,

Thank you all sooooo much!
Jessicya

not so great results

by sam78 - 2010-07-02 02:07:07

Same here.. IST, a part of POTS (I have the increase in heart rate but not the decrease in blood pressure). I had a complete AV node ablation because it was not controlled by meds. I am no pacemaker dependent. I have not had good results. I am back on the same meds that I was prior to having the pacemaker put in because I am symptomatic when I have the sinus tach. The AV node ablation made it so the tachycardia doesnt doesnt happen in the lower chamber but it still happens in the top chamber. And when the upper chamber is at 180 and the low chamber beats at 80 it feels aweful. Has not been the end all cure all for me.

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