Hi @mspop111,
It sounds like you are one of many for whom Camzyos just isn't going to work. It's definitely worth trying now that it is available, but again...it just isn't for everyone.
That being the case, you are left with fewer options for treating symptomatic HOCM.
May I offer my advice? Please do not let distance be one of your factors in seeking out a Center of Excellence, nor do not rule out listening to the experts at the Center of Excellence!
I travelled across the country to land in Minnesota to have open heart surgery. If I was going to go through this...by golly I was going to the best in the world!
Cleveland Clinic is also a COE, and I know medicine makes advances all the time, so if a COE is making progress on minimally invasive septal myectomy that is great. Prepare to learn you may not be a candidate for it, and accept that information and process accordingly.
Only you can make these decisions, but doing all the homework, research and fact finding, just as you have, will put you in a better place when you do finally make your decision.
Open heart surgery would cause any normal person to recoil with fear! I remember sitting in a chair, across from the surgeon, hearing him tell me I needed a septal myectomy. I think all the blood drained from my head, the room felt like it was shrinking, and my hands starting sweating. I told him I heard about minimally invasive surgery...could he do that. The answer was no. And his reasons resonated within me and I agreed. I could not believe I had actually agreed to have open heart surgery. I was stunned. Shocked. I felt like I was dreaming.
So I get the fear. But I knew I could not live my normally super physically lifestyle with HOCM any longer. In fact, I was not sure how long I would even live! So here I am, four years later, ever so grateful for open heart surgery. Yes, it was rough. I was 62 years old at the time. But it was not as heinous or terrible as I had conjured up in my own mind!
I had to decide to leave my home, travel a great distance, go through a tough surgery and fly back home to get to my dad, who was on hospice. He died three days later. So I know it can be difficult. But you are stronger than you know already!!
Dr. Steve Ommen at the Mayo Clinic is considered the world's leading expert in HOCM. He writes the protocol for treatment of HCM/HOCM that other doctors practice.
I mention this only to let you know that your life is more important than distance or trying to find a surgeon to do a surgery that may or may not be right for you.
I'm not trying to tell you to give up looking for someone to do a surgery you would rather have, I am trying to tell you to find the best and listen to what they say with an open mind.
I did a lot of research before I had my surgery, and I remember well thinking much as you are right now. I never thought I would fly across the country a go the the Mayo Clinic. Again, the point is do not let distance be your guide...let the experts guide you to your best decision.
Did I make any sense here and sound helpful?