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Has anyone had surgery for Apical Hypertrophic Cardiomyopathy
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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@judpuds sorry, I’am at 7 weeks, not 12. Before Cazmyos, I was on bisoporol. I did not feel nearly as tired. Doc says it takes 3 months to adjust to this med.
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1 ReactionHello @annieobee,
I combined your discussion with an existing discussion titled:
"Has anyone had surgery for Apical Hypertrophic Cardiomyopathy"
- https://connect.mayoclinic.org/discussion/has-anyone-had-surgery-for-apical-hypertrophic-cardiomyopathy/
Here you can meet other members who discussed their diagnosis, treatment and management of apical hypertrophic cardiomyopathy.
I'd like to invite @holly1275, @superkhal, @dbrima and @metta to this discussion to share how they are currently doing with their diagnosis.
@annieobee, you mentioned some of the worsening symptoms with your diagnosis, how are you currently managing those with your provider?
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2 Reactions@fletch1950
Has anyone diagnosed you with hypertrophic cardiomyopathy or (Hcm)
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1 ReactionIt sounds like what I have. It’s a genetic condition where the left ventricle grows obstruct g breathing
I had it 2 years ago at Mayo Clinic. But I had an open heart surgery less than a year earlier. I am better than I was with just the septal. However, since I am u see 40, it’s been a mental and physical battle. I am easily tired and struggle going up the stairs
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1 ReactionI had a Septical Myectomy in 2024
Then I just had a REDO Septical Myectomy 7 weeks ago.
I get confused sometimes because I had one Dr Do A ECHO and this was after my Septical Myectomy REDO.
And it showed up as A Apical Cavity Obliteration And A Apical Anyurysm,
They did a Right Heart Catherization today and it came back good no Pulmonary Hypertension and no VSD they looked for a hole as it also showed Highly Thinned And Dyskentics in the Basil area
I am grateful and relieved that it was normal but I still don't understand the Apical Cavity Obliteration And A Apical Anyurysm, I still have no answers, so is it Apical Hypertrophic in the the Apex the tip of the heart can you have both kinds of Hypertrophic Cardiomyopathy.
My heart goes from High heart rate down to to then back up again down to 50 I have a ICD I learned to finally live with what I have Yes I get tired yes I get out of breath but I am still here, and still fighting I believe they have done all they could.
I might never find out if I have both kinds of HCM that's ok, I am ok with it I don't want to dwell on it anymore it is what it is ...
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3 ReactionsYes you can. Dr Derain at the Mayo Clinic said few know how to do it. He called mine a re- do, essentially saying without both an apical and skeptical, the first surgery was worthless
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1 ReactionDr Derani took out 10x more than my Houston dr. From apex. Septical alone was a waste
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1 ReactionThank you dbrima l thought so but I wasn't sure I guess the second time around seven weeks ago they must have felt I didn't need it they did the same are and extended it near the Basil don't know what to do with the Apical Cavity Obliteration I guess it's not that bad..
How are you feeling now? I hope everything is well...