If this is your first visit, be sure to check out the FAQ in HCMA Announcements. You may have to register before you can post: click the register link above to proceed. To start viewing messages, select the forum that you want to visit from the selection below. Your Participation in this message board is strictly voluntary. Information and comments on the message board do not necessarily reflect the feelings, opinions, or positions of the Hypertrophic Cardiomyopathy Association. At no time should participants to this board substitute information within for individual medical advice. The Hypertrophic Cardiomyopathy Association shall not be liable for any information provided herein. All participants in this board should conduct themselves in a professional and respectful manner. Failure to do so will result in suspension or termination. The moderators of the message board working with the HCMA will be responsible for notifying participants if they have violated the rules of conduct for the board. Moderators or HCMA staff may edit any post to ensure it conforms with the rules of the board or may delete it. This community is welcoming to all those with HCM we ask that you remember each user comes to the board with information and a point of view that may differ from that which you hold, respect is critical, please post respectfully. Thank you

Announcement

Collapse
No announcement yet.

Do you have a listing of cardiologists specializing in HCM?

Collapse

About the Author

Collapse

khoff4786 Find out more about khoff4786
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • 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.

  • #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.

    Comment


    • #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

      Comment

      Today's Birthdays

      Collapse

      Working...
      X