Has anyone had surgery for Apical Hypertrophic Cardiomyopathy

https://connect.mayoclinic.org/event/hypertrophic-cardiomyopathy-and-the-surgical-treatment-apical-myectomy/?pg=5#comment-381790
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.

wow! and i thought i had problems! i am 58 and getting an ICD on friday. Good luck. i have HCM apical variant too.

Why didn’t Camzyos work for you if I may ask? It didn’t for me either sadly. Thanks.

Hello,
I am 63 years old and it will be 2 years ago in November I had 2 procedures during one surgery at Mayo Rochester with Dr. H
Schaff - expert cardiac surgeon. I had both septal and apical myomectomies. I had it all done at once. Recovery is tough. I will always have diastolic heart failure and secondary pulmonary hypertension but I am stable for now. The pathology showed myocardial fibrosis and interstial fibrosis so longevity is not in my favor.

Hello, and welcome to Mayo Connect @dreitmey, it looks like this is your first post.
Thank goodness you had one of the top surgeons in the world doing your surgery! I had a septal and papillary myectomy at Mayo four years ago this week...and I am also thankful I had it done at the Mayo Clinic. The care is like no other, and that is a blessing, because open heart surgery can be tough. But you are tougher!
I am glad you are stable and doing well now. I'm sorry you have pulmonary hypertension and heart failure. Is that a result of the surgery?
I am curious about your comment regarding interstial fibrosis and longevity...my pathology report noted the same thing, but I was never told it shortened my life. In fact I was told I have the same life span as a person without HCM now after surgery. Is this what you were told was due to the fibrosis, or a combination of your other symptoms too?

I just had both procedures done- apical and septal in Rochester. My doctor at a highly ranked hosp in Houston left too much muscle and so I had to do a re- do and no one in Houston has ever done an apical. I am 34. Are your problems tolerable? I thought this nightmare was over!

My pulmonary hypertension and CHF symptoms are how they discovered the HOCM. Post surgery, these symptoms improved. I have been told my life span is average; however I have fibrotic heart muscle - stiff muscle - which doesn't push the blood as it should. Given my other diagnoses, statistically, longevity is limited 5 maybe 10 years. I hoped all symptoms would resolve but my heart was very damaged. There was a discussion of a heart transplant but there is a lot of risk with that too.

Hi,
My symptoms are better some days than others. I must conserve energy. From 2020 until surgery in 2022, I was declining quickly such that I could not make a flight of stairs...and now I can do stairs well. I am on several meds to keep my heart rate low though sometimes my blood pressure got too low. Even though my dr decreased my meds they still make me tired and dizzy. So my answer is my symptoms vary since the procedure. But the surgery was a life saving one. Being alive and present for my family is worth it.

I hope you get help at Mayo. I have apical hcm also. No surgeries yet. Just wanted to wish you the best of luck.

I had Dr Dearani at the Mayo Clinic perform the surgery. I had both the apical and septal myectomy. My previous Dr., less than a year ago, did a septal myectomy and cut what would be about the size of a baby finger. Dr Dearani took out what would be the size of 2 hands. I am still recovering but to think there was so much more (10x more) is alarming. I did not have relief from the first septal myectomy ( which I think makes sense)) given how much there was to still take out.