Today I had my appointment with my EP (electrophysiologist) to follow-up after an event monitor found several events including PACs and a run of SVT. Some things were reassuring, some confusing and some upsetting.
She drew pictures and explained to me what she thinks is happening. She called these irregular events – ECHO BEATS. This is a term I have not heard and cannot find much about it. She is polish and perhaps they use different terminology?? She said echo beats were the beats that precede an SVT event. On my results was a run of 7 SVT beats. She showed me the early beats (which I think are the PACs) on the graph. And she asked me, “You must be really sensitive, huh?” Ummm yep!! Telling you, I feel EVERYTHING.
In her picture she showed a loop and said the beats were getting trapped in this loop created by an extra pathway. I have done some reading online and cannot really tell if this would be AVNRT, AVRT or AP. While showing me the readout (ekg-style), it all just looked like PACs but in the SVT event it looked like a bunch of PACs right after one another. I never felt the fast rate of the SVT, only the pause after. I always feel the pause…it simply feels like your heart stops for a second.
Because I didn’t feel the fast rate, we want to make sure I am not having more than we think so I am wearing a lovely Holter Monitor for 2 days. No shower or bath ALLL weekend. SUCKYYYY!!! I am addicted to hot baths in the winter. I will also not be leaving the house until I can take this off on Sunday. And she doesn’t want me to take any of my anxiety medicine so that she can see it at its worst. GREAT! This will be a blast. (sigh)
I had a bad night last night and the anxiety med helped I think. It was skipping every 30 seconds for 10 minutes straight. I got so panicked that I started shaking and got super cold. I haven’t felt like that in years. Anyway…
She showed me the wires/caths she uses for her EP Studies/Ablations. She told me the name, but with her accent, it was hard to understand. Something like STEROXIS SYSTEM or something like that. She showed me the ones most hospitals use which were stiff and hard to move compared to this new kind which are more like spaghetti. They are magnetized and they can control with within millimeters. She said because of those, there is much less chance for error.
- What is the success rate for ablations? With the problem she believes I have, she said 99%. She said if the extra pathway is too close to my natural pathway, she simply won’t do the ablation.
- What is the worst thing that can happen to me if I do NOT get an ablation? She said it is POSSIBLE (about 11% I think she said) that I could end up with AFIB. If that happened, I would then get an ablation, but the success rate might not be as high as it can come back. AFIB can have a risk of stroke or heart failure…eventually…MAYBE. She promised that none of these would cause sudden death. But she also knows how scared I am…so is she not telling me things to stop me from worrying???
- Why have the ablation? Biggest reason is quality of life. She must have noticed my tears and phone calls and huge list of questions. She can see these are affecting my life and making me unhappy. She said, “Why on earth live that way if I can fix it in a couple hours and you will never have to see me again.”
- Would I be sedated for the procedure? She said I would be asleep the whole time. I asked if being sedated would make it hard to trigger the problem (they need to do this in order to fix it). She said, “Oh, I will get it going, don’t worry.” I told her I have a huge fear of adrenaline. She just said…you will be sleeping, you won’t feel it.
- I asked if prior pot use caused this. She said no. But that it was good that I quit because it isn’t good for my mind with the anxiety which makes the beats worse.
- Can I have a glass or two of wine? Yes, but only white wine. They are finding that red wine can be a big trigger for many people. Weird. And not a lot, only a glass or two.
- Do hormones play a role? YES!! And it surely WILL get worse the closer I am to menopause.
- Is this genetic…could I give this to my daughter? No.
- On the event monitor, every event was recorded by me…it never automatically went off due to a dangerous event.
- How does the Beta Blocker help? Probably more for anxiety…it slows the heart rate too.
- When should I worry or go to the ER? Never. (LOL…seriously??!!)
- Can stress cause this? No, but it makes it worse.
So, she is REALLY pushing for this EP Study/Ablation. She said she cannot be sure what kind of SVT I have until she does the study. It would be done in Milwaukee. She acted as though it was a no-brainer. Although she did say I am in no real danger if I do not get it. She said it really is a quality of life thing. And she thinks I wouldn’t be as fatigued if this was cured. I have been majorly fatigued since my teens and they have never been able to tell me why.
But there are risks to the procedure which include stroke and death. Those rates are pretty low, but WHAT IF?? Is some discomfort and anxiety a few times a month worth possibly dying or having to have a pacemaker???
And let me kinda explain this ablation thing to ya…
I would be put under with a general anesthetic. I have had this once before and it scare the piss outta me. And this time would be worse because I would have to be intubated (I did not have to be last time because it was so short). Then they shave your peek-a-chu and make a couple incisions in your groin area. Through those incisions they thread wires up to your heart. They then put adrenaline (or a like substance) into your IV to make your heart go into the irregular beat. Once they can map the beats and see where the issue is, the then burn it with the tip of the wires…essentially burning a scar onto your heart where the extra pathway is. UGH. It sounds so awful.
I have a huge decision to make and it scares the piss out of me. I will see what this Holter reports probably in about a week. I will then get a second opinion from a cardiologist at a different hospital as well. I am doing that only because I know that with specialists (an EP is a specialist) – they often are more eager to perform their talents. I’d like to see what a cardiologist has to say and since my mom kinda knows him through work…why not, right??
Okay. So…I would LOVE to hear what you have to say. I am sorry this is so long. I hope I didn’t leave anything out.
So, what should I do? I really need input, advice, etc….
By the way…thanks for listening!!
UPDATE – I found the info on that new cath system she was talking about – http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1586159/