[ICD or no ICD?]

Author: Craig (---.dsl.sfldmi.ameritech.net)

Date: 05-21-02 13:39

Hello again,

Well, I finally received my test results from Cleveland (Dr. Lever) and have also done a follow-up with my local cardiologist. Now, it appears a controversy is arising. Here are the basics of my condition:

Age -- 31 years old

Meds -- 100 mg Toprol, 5mg Norvasc, 81mg Aspirin

Septal measurement -- 3cm (it was 2 cm in 2/98, and 2.5 in 11/01)

Risk factors -- No known sudden death in family due to HCM, no passing-out, one very brief dizzy spell (<10 seconds), no shortness of breath, no evidence of Afib, Vtach, or Vfib on several holters, event recorders, etc.

Ejection fraction =60-70%

Peak resting gradient of 22mmHg

Peak stress gradient of 42 mmHg

102% of exercise capacity on my stress test with no abnormal blood pressure and no angina

Two "enzyme leaks" of Troponin (3.1 was peak measurement in blood), no evidence of any ischemia.

Now, here's the catch: based on my recent brief dizzy spell, my local cardiologist says "get an ICD right away." Dr. Lever from Cleveland says "do a 30-day event recorder and we'll see."

My question is: if the event recorder shows nothing (which it has in the past), then what the **** should I do? I have looked at the two different studies out there (Maron's and McKenna's) and they seem to be at odds. One says if the thickness is greater than 30mm, then get an ICD (even if no other risk factors are present). The other study says, if you have more than one risk factor, then get the ICD.

So, what do you all suggest? Of course, I plan to do the event recorder, and this will give us more information. But, I am genuinely confused about what to do? I really have no idea of my relative risk for sudden death at this point. High, medium, low?

Any help would be greatly appreciated.

Craig

P.S. ALso, Lever says absolutely no alcohol for anyone with HCM. So, no more NA-beer for me. Thought I would let you all know.

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[Re: ICD or no ICD?]

Author: Craig (---.dsl.sfldmi.ameritech.net)

Date: 05-21-02 13:40

Oh yeah, and I am not obstructive according to Dr. Lever from Cleveland.

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[Re: ICD or no ICD?]

Author: sarah beckley -moderator (---.dsl.mindspring.com)

Date: 05-21-02 13:46

Dear Craig,

Have you addressed your questions to Lever about what your risk really is? If you want a second opinion, I recommend either Dr. Maron or Dr. Nishimura at the Mayo.

None of us is qualified to tell you what your risk is. It is the nature of medicine that there is never any one answer. I know this is frustrating and difficult, but I would have a conversation with Lever about the other philosophy and see what he says --why does he disagree?

I will say, however, in my own personal experience that plain ole cardiologists who don't know HCM like to cover their *** an over-treat someone. Personally, I would go with the expert, but it is finally your call in the end.

I hope this helps a little. Don't rush into anything, this is a big decision.

Sarah

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[Re: ICD or no ICD?]

Author: Laura (---.proxy.aol.com)

Date: 05-21-02 20:52

I would go to another specialist and not tell them what Doctor Lever said and ask their opinion compared to your local cardiologist.

There are risk in any type of surgery.

Also listen to your gut, what is it telling you to do? Sounds stupid, but you never know.