ICD Removal?

[ericaa]

I have suffered from frequent PVCs since I was in my 20s. When I was pregnant with my daughter, I also started to have runs of NSVT which I suffered from during and for about 2 years after my daughter was born. When I first presented with the NSVT, I had an echo which was normal and after my daughter was born I also had an MRI. My MRI showed "bulging" areas on the right side of my heart that I believe are scar tissue. Because of the MRI results, I had an EP study but my doctor was unable to induce the VT. I also went to see Dr Caulkins at John Hopkins (he's a major expert in ARVD) to see if I had ARVD since I met some of the minor criteria but he felt that I did not. At the time, I was still having frequent runs of NSVT which really impacted my quality of life even though I was not fainting and I was basically in a nightmare of anxiety waiting for the big one. So this left me in a grey area where I didn't meet the official criteria for an ICD but was still having problems - my doctor suggested an ICD which I had implanted. The ICD really helped the anxiety and my symptoms have improved signifigantly and the NSVT has stopped or at least it has never been serious enough for my ICD to pace me and I have never had it go off. Now 5 years later, my device lead has fractured so I have to have the entire thing removed and I am considering not having it put back in. I am relatively young (38 yrs old) and will be facing a replacement about every 5 years going forward which starts to become a signifigant surgical risk especially if I need the leads replaced every time. I spoke with my doctor about having it removed becasue I believe my more severe problems were related to pregancy and therefore shouldn't really be an issue since I do not plan to have any more children but I was very confused about his response. At first he was very receptive to the idea as I expected since I don't fall into a defined high risk category but then when I came back for a follow-up he told me he thought I should stop thinking about it and just have it re-implanted. I have several different theories about why he had the sudden change of mind the main being that I have a crazy patient note i.e.anxiety problem in my file and he is concerned that I will come back and want to have it re-implanted as soon as I have any other problems. Unfortunately at the time I was so shocked by his sudden change of advice that I didn't ask any of the many questions I have and I am left feeling like I wasted my time and received no medical advice of any value. This was a different doctor than the one who I saw originally so I expected to get a relatively un-biased second opinion. I am wondering if anyone else is in a similar "grey" area and what medical advice they have received and what they decided to do about it. I know cardiac MRIs are a relatively new tool and the medical community really doesn't know how to interpret all of the results yet so it makes it extremely difficult to determine the signifigance of the findings in my MRI since I haven't been technically diagnosed with any specific problem.
Thanks to everyone for reading this - any advice is greatly appreciated!!

[itdood]

I think your analysis of the problem is spot on and your decision criteria is rational.  In particular "you don't fall into any risk categories".  well done.

As a fellow anxious person, I couldn't help but notice how your post went from rational thought to irrational anxiety when the doc changed his mind.  

Did you confront him about why he had such a large change in his opinion?  Be assertive there, you have nothing to lose.  One of the biggest issues for anxious people is lack of assertiveness.  

I think more data would help you here too.  Perhaps you could have an echo to compare to any previous echos.

The more significant electrical problems with the heart are related to some sort of problem with the cardiac muscle.    You've ruled out ARVD.  I too was once a candidate for that diagnosis but I find comfort in follow-up studies that show no progressive changes in muscle densities or measurements.  

In God we trust, all others must bring data.....   that goes especially for your doctor.

[kevk]

I feel it should be your choice, But I would want to know all the facts. Has your icd monitored any arrhythmia`s that may have been below the cut off rate to be shocked even unsustained should be picked up
I have been shock free for fifteen years now but at my last interagation i had over 100 runs of sustained v-tach below the cut off to be shocked. I do not even feel it any more or just became use to it.