Has anyone had surgery for Apical Hypertrophic Cardiomyopathy

Posted by dbrima @dbrima, Jun 4 5:40pm

Has anyone had surgery for Apical Hypertrophic Cardiomyopathy?

I am 34. I was on camzyos for a year. It didn’t work for me. Then last year I had a septal myectomy. I was ok for awhile but now my gradient is back up to 50. Supposedly, I still have thickness in the lower, more narrow part of the left ventricle. Doctors in Houston do not want to operate on me. They said it is too difficult to work in that area. My doctor is reaching out to the Mayo Clinic because they have done it for the past 10 years. Does anyone know of this procedure or have you had it performed?

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Hello @dbrima,
I'm so sorry to hear about your new development. I know one of the most important things about this surgery is to be in a COE (center of excellence) and Mayo Clinic is the leader in these surgeries.
I posted a link, that is really old, and I would also encourage you if you have not yet, to type apical hypertrophic cardiomyopathy in the SEARCH bubble at the top of the screen. There is a ton of information on apical HCM. In the meantime, waiting to see if someone can answer with authority, when does your doctor plan to refer you to Mayo? I recall reading the story of a woman on Connect who had a septal myectomy, not done at a COE, and she had to go back for a re-do. Unthinkable!! But true...I will look for her story and see if I can send it to you.

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