[Cheers]

Today I had my appointment with my electrophysiologist (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, Atrioventricular Reentry Tachycardia 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)

She showed me the wires/caths she uses for her electrophysiologist 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.

Q&A…
• 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. (General with intubation...I have never been intubated and it sounds horrible too). 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???

I have a huge decision to make and it scares the crap 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 electrophysiologist 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!!

[DaniRae]

Hmmm to be honest, I am rather surprised she is suggesting the ablation because your episodes are minor and seem few and far between. To be honest, I would get a 2nd opinion just because that is a big step. She does know better then I do though.

Also, I do think these things can be rather hereditary. I have found friends who have A-fib as their parents do. Or people with PVCs and their parents do etc. Maybe not, again I am not the expert.

But she basically said, this would be just so you can sleep better at night and not worry. I don't like to have procedures etc unless I have to. I guess anytime you open up the body, you run a risk. BUT.... I have heard of many people who have had an ablation and are very happy with the results.

Seeing that other cardio is a great idea if you ask me. My doc would not even consider ablation unless I started getting VT. But every doc is different.

[Cheers]

I found info on that new cath system she was talking about - Magnetic Assisted Navigation in Electrophysiology and Cardiac Resynchronisation: A Review

[Cheers]

Dani - I know exactly what you mean. When my mom spoke to the woman who works in the cardio dept at her hospital, she said they are much more conservative about ablation.

I think she is seeing that this is giving me SO much anxiety that it is really impeding on my life. To be honest, I do think about how nice it would be to never have to think about my heart again. To drink coffee without worrying if they REALLY have me decaf. To go on the rides at the water park without such worry. To not constantly be checking my pulse like a freak. To not be so fatigued every day of my life. To be able to lose this weight which I KNOW is being hindered by these BBs.

That being said...I am scared shitless to have a procedure like this. Everything about it scares me. Being put under is pertrifying...what if I dont wake up? Being intubated sounds horrible. The thought of adrenaline being pumped into my body - AAAHHHHH!!! No way. And wires POKING around my heart...jebus. The whole thing is so so very scary I dont know if I can handle that decision.

[DaniRae]

Ya know, I wouldn't worry about the decision right now. Lets see what this monitor says first. Then e can see what your other cardio says, then take it from here. We will try to help make this decision easier for you along with your family. I have heard ablation is very safe. The worse case I have heard of is that they can't fix the funky beat and you leave the hospital the same way you can. If anything, when the boost your HR they have the best meds to slow it back down and there is not a place in the world I would rather have a funky beat then right there, on that table with an electrophysiologist watching me.

[DaniRae]

sorry my laptop keys get funky and miss letters :p

[Cheers]

There are several stories on this site...and I know it is the site for the manufactorer...but still interesting. This one gave me tears because i could relate. My electrophysiologist said that her hospital is the only one in Wisconsin with this type of technology.

AVNRT Ablation - Patient Stories | Stereotaxis

Dani - you are right. I need to take this step by step. I do not need to decide now. Thank you so much for being her. PLEASE dont go away!!

[DaniRae]

I am not going anywhere and no need to thank me, I am sure one day I may need you to return the favor Support and reassurance can be some of the BEST meds if you ask me! I know it got me through hell and back.

[CMoore416]

I am like you - huge fear of surgery and procedures and probably wouldn't do anything unless magically necessary. But that's just me. I, too, would love to have it "fixed" but not at that expense. I'm such a chicken!! Anyway let us know the holster results. Exercise a little on it too!!

[jkfrench]

I also am wondering why she is so anxious to ablate. I had over 200 PVCs, over 100 PACs and two brief bursts of SVT (one 7 beats, one 13 beats) on my holter. My doctor said that it did not warrant an EP study and actually the risks of the study were much greater than having this SVT, PAC, and PVCs. I also have episodes where I get the long pause and my heartrate shoots up over 220 for minutes to the longest being about a hour. This was happening about 4 times a year 10 years ago, but the atenolol has almost diminished them. I think the last actual SVT attack I had was about 2 years ago. I still get the short bursts but nothing more.
So I agree, a second opinion is warranted. However, remember that there is no need to worry that this will kill you because it won't.
Jodie