Anyone else with HCM as well as a sub aortic membrane too?

Just learned about my SAM last month with a CT. Very disappointed it has taken away the medication option if I only had HOCM.

@lewandrowski5 , hello and welcome to Mayo Clinic Connect.
What are the odds that you get to have not one, but TWO congenital heart conditions?!
That is for certain a lot to take in and process.
I am a little confused...you knew you had HCM and just found out about the subaortic membrane?
Or you now have HOCM and along with a new diagnosis of SAM, you cannot take Camzyos?
No matter...it is still a lot to process.

During my journey through HOCM, I was also diagnosed with SAM.
By the time I got to the Mayo Clinic in Rochester, MN, it was still on the table and they were not able to rule it out along with HOCM, and I was scheduled for open heart surgery.
I was told, that whether I had it or not, I still needed the open heart surgery as my HOCM was severe. And if the sub-aortic membrane was there it would be addressed as well.
I also was told I may need to have my aortic valve replaced, and this would all happen at my surgery.
You wrote only three sentences.
I am known as the wordy Mentor around here, so to make this longer than necessary, I had severe HOCM, did not have SAM and did not need a valve replaced.

But the stress of all this was REAL! So I get where you are coming from.
Here's what I want to ask you: Have you had a second or third opinion from a leading expert in diagnosing and treating HCM and SAM?
If not, I highly encourage you to consider this.
Treating complicated cases is what the Mayo Clinic excels in, but there are other Centers of Excellence that you can draw from as well.
Here's a link to a well-known organization, not affiliated with the Mayo Clinic, that has a link to COE's by State.
https://www.4hcm.org/
Don't give up!
You have to keep learning more and more about what you have so you can be the best advocate for yourself. Nobody can do that for you!
Do not despair.
It's easy to feel overwhelmed after finding out about all these scary things...but you owe it to yourself to educate yourself, so the scary stuff gets filed away, replaced by facts and knowledge.

Don't settle for one opinion.
If you are disappointed, I understand. But follow through with another opinion.

How is your health otherwise? Are you active and physically fit?

Thank you for your story. My knowledge of the SAM came only after a CT scan done because of a MRI that indicated a potential for one. Only then was it for certain. I just was made aware of my HOCM this spring. The membrane per the CT is thin fibrous associated with the anterior mitral value leaflet with suspected small communication with the Basal Septum

My health is ok. I was told to not go over 120 bpm. I am better in the morning but generally very fatigued and loopy in the afternoons. I am at a loss at what to do.

17 is my septal number.

No second or third opinion just one from a HCM Dr. at Virginia Heart other than the two tests (MRI and CT) that is.

HCM started having detectable gradients in 2021. Got significant worse in late 2025 echo check.