Dr proposes surgical myectomy--but I have no symptoms

Hello there @susanh711 and welcome to Mayo Clinic Connect.
Boy, that must really seem to come from out of left field being told you need open heart surgery and you don't have symptoms! That's crazy!
Our little online community can't offer medical advise or second guess what your doctor has recommended, but I can offer you advise to think about a second opinion.
The most important component in treating HOCM/HCM is having a trained expert on the disease. Is your cardiologist well versed with all things HOCM?
I was also diagnosed with aortic stenosis, mitral valve prolapse, regurgitation, small vessel disease and was told I needed open heart surgery by my local cardiologist for a very rare condition, Sub-aortic Membrane. Turns out I didn't really have them...it was all due to the HOCM.
Before making the decision to have open heart surgery locally, I asked to be seen by two outside Centers of Excellence (COE) Cedars-Saini and Mayo Clinic after I did research on the top hospitals for my very rare condition.
When I was diagnosed with HOCM I was stunned!
I would have had open heart surgery for something I did not have! When I got to the Mayo Clinic Rochester, I knew I was in the right place. I was not happy when they said I need open heart surgery as I was hoping to avoid that like the plague.
My long story is to help you consider your options, and you have many. This is your life you are talking about and only you know you as well as you do. I would consider another opinion before making this important decision.
By-the-way, at the Mayo they told me I may be in need of a valve replacement and I had to consider if it was needed which one, mechanical or tissue. To make my longer story longer, when they got in to the surgery, I did not need a valve at all. My HOCM was so severe it made my murmur so stunningly loud, but it was all from the obstruction.
Are you comfortable asking your doctor to refer you to a COE like the Mayo Clinic?
The Mayo Clinic is the leading expert in treatment of HCM/HOCM and the very precise surgery that it entails. I had to fly across the Country to get to Rochester, but I feel like that choice saved my life!
Are you active physically?

My diagnosis of HCM was done at the Mayo earlier this month. They are the ones proposing OHS. Can I ask who your surgeon was at the Mayo and what your experience was? (I am terrified and trying to avoid this in any way I possibly can. ) What was your experience with Cedars-Sinai? I understand they do a lot of minimally invasive procedures and I'm hoping someone knows where that might be done. Otherwise, I'm asking about alcohol ablation followed (a month or so later) by TAVR (though I still have some concerns about TAVR). Appreciate any experience/information anyone is willing to share.

Tomorrow (21st) is the 2nd anniversary of my septal myectomy at Mayo! Dr Schaff was the surgeon, one of the many of excellence on staff. Terrified does not begin to describe how I felt but I can reassure you that acceptance as a patient there puts you in the 99% success rate for the surgery. Alcohol ablation was not recommended by Mayo because of where my thickness was located and my home cardiologist likened it to a heart attack in that cells are killed, yet it helps many. Septal Myectomy is the Gold Standard of treatment for HCM and Mayo is the #1 place where thousands have been performed. Now, surgery was suggested by my home cardiologist for years (I thought surgery? You got to be kidding! I am leading an active full life!). Now I see where he was going with it, I did not believe HCM would eventually affect me as it did, I walked, rode a bike, etc. No symptoms for 15+ years. Then some slowing down. February 2022 I passed out, there had been increasing obstruction over the years as seen on a yearly echo. At this point cardiologist told me "Your family will miss you." Wow! It's time! I am so very glad I got my courage up even though terror never vanished. Today I walk a 10k with ease, ride a bike 20 miles, life is very normal. There were a couple of short-lived after surgery complications, one of which took 4 months to figure out. Susan, Debra has great advice! I, too traveled to go to Mayo (upstate NY). If you decide to go through with it, you will be in good hands doing excellent care. Learn all you can, another opinion may help you decide your best next step and let us know how you are coming along!

I lived all my life with HCM with no symptoms and not even knowing I had it until I was 75 years old. But at 80 years old, I had to undergo a septal myectomy which required open heart surgery. I would have preferred to undergo an open heart surgery when I was younger because I believe the recovery from surgery would have been a heck of a lot easier. While I was at Mayo Rochester, I watched younger patients (50 -70) have much easier recoveries. If you have doubts, maybe you could get a second opinion. Best of luck to you.

Hi @susanh711
I was diagnosed with obstructive HCM about 15 years ago. Dr Michael Wahl took such a good care of my heart for 13 years that all I was taking was 100 mg Metoprolol with very mild angina issues. I was doing my part by walking 2 to 3 miles per day and having great vegetable diet with very low fat meat/chicken/ etc. Last year was the problem after I got Covid 19 for the first time my septum basal went up from 1.3 cm to 2.2 cm which is a huge block at the lower part of my heart. My Cardiologist referred me to a highly specialized surgeon for a possible open heart surgery. I saw the new cardiologist who gave me 3 options: open heart surgery, or alcohol oblation or CAMZYOS oral capsule treatment. I chose CAMZYOS (the Cardiologyst, his nurse, the mail delivery pharmacy and myself had to be certified to use that medicine which side effect can go as far as a heart attack). The first week of CAMZYOS 5 mg I felt a lot better, my angina was totally gone, my monthly echocardiogram (required to keep taking Camzyos) showed incredible improvement my pressure in my heart went down the first month from over 200 to around 30 ONLY!!! My septum diameter size in 3 months went down from 2.2 cm block to 1.4 cm!!! which is 40% improvement!. The medicine is covered by my insurance ($8,500 per month) and the laboratory that manufactures it helps me with $200 copay so I pay only $10 copay per month.
Ask your doctor if non-surgical procedure using CAMZYOS can help for it is not for everyone due to the potencial side effects (in my case very light dizziness for 2 weeks that is gone forever now). Try to take walks for that helps a lot. I wish you the best and if you have any more question about my Camzyos treatment, please let me know.

Wow! That sounds wonderful! I do watch my diet and stay very active (working out with weights, walking daily etc). I will be meeting with someone from NYU Langone where they have a large HCM med/surg treatment clinic. Here's hoping!