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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blessmyheart | @blessmyheart | Jul 24 1:11am

In reply to @katiekins "Why didn’t Camzyos work for you if I may ask? It didn’t for me either sadly...." + (show)

Me either. Made me feel like heart was gonna beat right outta my chest. Pounding.

blessmyheart | @blessmyheart | Jul 24 2:07am

In reply to @dbrima "I had Dr Dearani at the Mayo Clinic perform the surgery. I had both the apical..." + (show)

This seems to be such a common story with myectomies at a center who doesn’t routinely do a lot of these. Makes me
Wonder if they’re just doing them to get their numbers up rather than referring to a more
Experienced surgeon for this highly specialized procedure to give the patient the best chance.

katiekins | @katiekins | Jul 24 8:02am

In reply to @blessmyheart "Me either. Made me feel like heart was gonna beat right outta my chest. Pounding." + (show)

Oh no poor you. Which drugs are you on now? If I may ask what is your gradient and thickness of the obstruction? I am now waiting for a mitral valve repair!! It’s all so confusing as this has been going on since 2007! Haven’t been that ill with it either but now tiredness creeping in especially after eating protein.

blessmyheart | @blessmyheart | Jul 24 2:50pm

As of my echo last year no obstruction and I’d have to look at the measurements but septak thickness was not outside of normal. My hypertrophy is mostly a local but I have extensive fibrosis. Given my recent symptoms I’m thinking my upcoming echo may show obstruction. 🙁

blessmyheart | @blessmyheart | Jul 24 2:56pm

I was on verapmil a long time ago to attempt to prevent remodeling from diastolic filling pressures. Gave me headaches that bordered on migraines every morning so I stopped taking. Long term studies didn’t show any improvement with this regimen for
What I last read but it was worth a shot. I’ve been on spironolactone (diuretic) a few months but Im concerned it interferes with my hormones and perimenopause has been a whole other beast to manage. I don’t want to mess with that because the hormone replacement had helped those symptoms and my QOL so much! I’m open to ideas of what’s worked for others

bobbyknik | @bobbyknik | Jul 25 10:35am

My hypertrophic was fixed on Feb 2nd by Dr. D'Allesandro at Mass Gen. I am a new man,

blessmyheart | @blessmyheart | Jul 25 1:43pm

In reply to @bobbyknik "My hypertrophic was fixed on Feb 2nd by Dr. D'Allesandro at Mass Gen. I am a..." + (show)

That’s wonderful news! Thank u for sharing. Was the “fix” procedure a myectomy?

walkinggirl | @walkinggirl | Jul 25 1:44pm

In reply to @bobbyknik "My hypertrophic was fixed on Feb 2nd by Dr. D'Allesandro at Mass Gen. I am a..." + (show)

Ah! That's the other place my cardiologist suggested besides Mayo for my septal myectomy two years ago. I am so glad they did a wonderfully successful surgery on you. I went to Mayo and am also extremely happy with the outcome.