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Do you have a listing of cardiologists specializing in HCM?

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  • #1

    Do you have a listing of cardiologists specializing in HCM?

    Hi! I'm new to this forum but have lived with sub-aortic stenosis with aortic insufficiency since birth. Diagnosed at a year, I was carefully monitored until age 19 where symptoms increased and pressure gradient was measured at 65% during catherization. Time for surgery. A myectomy was performed successfully. The aortic valve looked inherently good so the surgeon decided to sew me up and monitor. He made the right choice as I felt better than I had in years. It took 19 years for the hypertrophic muscle to "grow back" (swell) and the leaking through the aortic valve to get worse. Symptoms also got worse. So off for surgery once again. The Ross procedure was attempted but my aortic valve had two leaflets looking pretty good and a third that was sagging due to the pressure of the blood forcing it's way through (and leaking back out) of the valve. So the surgeon switched gears mid surgery and decided to "cinch up" the third leaflet of the aortic valve. Again, recovery was swift and I felt high from all the oxygen now being received by my body.

    I've an active person but recently have been noticing symptoms once again. Went for an echo today. But I know my local cardiologist is unfamiliar with HCM and I'm her one and only sub-aortic stenosis patient. I don't think I'm in dire straights but I think the hypertrophic muscle is growing "why does it do that?" once again from a couple of comments the tech.

    After reading about the new septal ablation treatment at the Cleveland Clinic I'm thinking that I might want to seek out a new cardiologist for a thorough check-up and opinion. I really like my cardiologist here but I know she's not up on the latest and greatest.

    Any suggestions? Where do I go from here?

    Also, any other posters on this forum that have been through two myectomies?

    Kim
    Female, 43 yrs. old. 2 surgical myectomies, one in 1980 and one in 1998. The last included an aortic valve repair. Current meds are for high blood pressure: Norvasc and Aldactone.
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  • #2
    Hi and welcome to the HCMA. We have at least one person, angall, who has had 2 myectomies. Please call Lisa for a specialist who might be best for you. Her phone number is at the bottom of this page.

    Reenie
    Reenie

    ****************
    Husband has HCM.
    3 kids - ages 23, 21, & 19. All presently clear of HCM.

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    • #3
      Kim, Welcome. Thanks for sharing your story. Try to give Lisa a call, she should be in the office tomorrow, although Kelly will be there today and can help you find a good time to call. Linda

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