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For anyone interested, my story continues.
I spoke with HCMA and they suggested I be seen by a COE clinic first, before considering surgery. There are strange things going on with my case and some of my scans (like varied thickness from scan to scan) and I still haven't had a cardiac MRI.
Sounds like Mayo knows I'm a "candidate" for surgery, but since we haven't really discussed with anyone and my symptoms are fairly low, there's a lot of questions still that I should be considering.
My cardiologist at Kaiser now told me that he doesn't think I need surgery now (he was even wavering during my last appointment), but he's the one that brought it up in the first place.
I am admittedly frustrated because I'm limited to who I can see due to my insurance. I'm willing to pay out of pocket to see a COE for a full review, but I need a referral for that. Tomorrow I will be asking my primary for that and if he won't (or can't due to Kaiser), then hopefully HCMA can help guide me.
Did anyone else get diagnosed without cardiac MRI and only echos?
Replies to "For anyone interested, my story continues. I spoke with HCMA and they suggested I be seen..."
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I had my first cardiac MRI during the 2 days of tests and interviews immediately before my scheduled septal myectomy. Echoes were used over the 10-15 years from when HCM was diagnosed. One of the effects of HCM is (rarely) sudden death such as with athletes and others who are in otherwise excellent physical condition. A full review at a COE for HCM would be an excellent thing to do in planning your future treatment!