When is Myectomy indicated?

Hello @rebaheizer, this looks like your first post in the Hypertrophic Cardiomyopathy group, so welcome!
Sorry you're here, but glad you found us!
Have you had a chance to look at any of the many, many posts here on HCM? There is a TON of information you can find on Connect regarding HOCM/HCM and the treat options such as Camzyos. It may be overwhelming just being diagnosed, but take a deep breath and exhale...you are in good company here and we are here to support each other along our journey through HCM and HOCM.
Here is a link to read you may find interesting:
https://connect.mayoclinic.org/discussion/hcm-ers-introduce-yourself-or-just-say-hi/
Here is another about HCM:
https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/symptoms-causes/syc-203501
And yet another:
https://www.4hcm.org/
And in case that's not enough, here is a link to the Camzyos folks:
https://connect.mayoclinic.org/discussion/camzyos-mavacamten-prescription/
It's not good to offer medical advise on Connect, but we can share our stories and what we have had done or are doing to treat this obnoxious condition. We are all so unique and surgery depends on your consultation with the surgeons and experts. A COE (Center of Excellence) is the best place for expert care. Do your research and learn as much as you can so you can be informed and help make decisions about your health. This is your life!

You mention your clinic is great, but you have a lot of questions...when do you see your doctor next and do you have your list of questions written down so you don't forget?

Like @karukgirl said this is a great site loaded with tons of information. I know you mentioned your clinic is great but is it a center of excellence?
Lots of facilities say they can do septal myectomy but the reality is there are on a handful of surgeons who do this effectively!
Please do your homework on this if septal myectomy is in your future!
I been dealing with symptoms for years that interfered with my running and biking it wasnt till i had two back to back exercise induced heart failures and my wife pleading with me to go to the mayo!
Mayo took me in really fast after hearing of my symptoms!
Diagnosed with HCM with severe lvoto that is exasperated when stressing the heart!
I played contact sports in my youth and the doctor made me realize how fortunate i was to have lived thru all that in my younger days!
Im 57 now and still in good physical condition but after the heart failure i could not climb a step stool!
When the mayo dr said i was a great candidate for myectomy it really set me back i was not expecting to hear open heart surgery! My gradient was 48 resting 122 provoked
He said lets get you on camzyos and get you feeling better and stronger and we will discuss surgery later!
My septal wall is 19

I did get stronger in a matter of two weeks i was back on my bike increasing mileage weekly from 1/2 mile to up to 15 miles
The camzyos has its limits though
I cant do hills and i cant make sudden quick movements witjout my heart murmur kicking in.
I'm scheduled for myectomy on the 19th of june in rochester
Best of luck to you
Dont hesitate to ask question here or with your provider

Thank you so much for sharing your experience! That’s exactly what I was looking for. I will be starting Camzyos as soon as the paperwork goes through. I am going to UVA and yes they are a COE. I am confident in my care there-I had bypass surgery 8 years ago.
I think insurance always requires the meds be tried first but that will never fix the septum. I’m 63 and would like to have surgery while I’m able if needed.
I’m going to have another test this week ( sort of a clinical trial). I’m willing to find out all I can as soon as I can.
Good luck to you. Bypass surgery was not as bad as I thought it would be.

"I think insurance always requires the meds be tried first..." That will depend on your individual situation. In 2022, when I had surgery, no questions were asked by my nonprofit Medicare Advantage plan regarding meds first. As far as when a septal myectomy is indicated for you, that is an excellent question to ask your doctor. As @karukgirl and @brumasterj have suggested, reading the blogs and I add: refer to https://www.4hcm.org/ to help you learn as much as you can. That will help you have knowledge and background to be an informed partner with your doctor in planning your treatment. I wish I had known all about these things before I had my surprisingly not-too-bad successful surgery.

Glad to hear your at a COE
For myself i cant say enough about camzyos and how it helped get me stronger! Miracle drug for me!
I have been off for 25 days now awaiting surgery! Started becoming more symptomatic within 6 days of being off,
They gave me 25 mg metropolol twice a day to help with symptoms and i was told to take it easy and not get myself back in the situation i was in a few months ago!
Dr's words please please take it easy while you are awaiting surgery
im not excites at all about the surgery but what im excited about is the surgeon said that i was going to feel 20 yrs younger!
best of luck on your care and the future of dealing with your HCM