OHCM and Mitral Valve involvement

Posted by avcowie @avcowie, May 18, 2023

Has anyone had mitral valve prolapse along with a nearly normal looking septum? I was at the hospital for surgery and it was cancelled after my scan. The Doctor said they weren’t prepared for my mitral valve complication and then they brought up Camzyos. I’m a bit confused about why the medication wasn’t offered in the first place. Ideas?

Interested in more discussions like this? Go to the Hypertrophic Cardiomyopathy (HCM) Support Group.

Colleen Young, Connect Director | @colleenyoung | May 19, 2023

@avcowie, oh that must've been disappointing, confusing, tramautic - I'm not sure what emotions - to be all ready for surgery only to hear that it couldn't be done that day. I'm surprised that the mitral valve issues weren't noticed earlier.

There are other members here who have had surgery involving both a myectomy and mitral valve repair. You might be interested in reading the experiences of @debcrawford @lina2017 @margie11 @mbcube @cynaburst @carsangelop @rrowner2 and others in this related discussions:
- Myectomy with valve replacement https://connect.mayoclinic.org/discussion/myectomy-with-valve-replacement/

- I am scheduled for Septal Myectomy & Mitral Valve Repair Surgery https://connect.mayoclinic.org/discussion/surgery-on-jan-30th/

You'll notice by the dates that the discussions and the surgeries took place before the approval of Camzyos. Now there is a new option available. Is it possible the Camzyos wasn't yet approved when you were originally scheduled for surgery?

It sounds like you now have options of surgery (providing you are at a center of excellence in HCM) or medication. Have you discussed the risks and benefits of each option with your team?

avcowie | @avcowie | May 25, 2023

In reply to @colleenyoung "@avcowie, oh that must've been disappointing, confusing, tramautic - I'm not sure what emotions - to..." + (show)

I’m also surprised they didn’t notice my mitral valve issue beforehand.
I live on Vancouver Island and the Center of Excellence is in Vancouver, which is about 5 hours away (including a ferry ride).
My local cardiologist is talented but I have my concerns since they missed the mitral valve issue and had they spotted it then the surgeons at St Paul’s would have been prepared.
Now going through trying this medication, I realize I am likely to want to have the surgery. I want to travel and maybe settle down in Europe somewhere and I don’t want to be tethered to North America by a drug. I did discuss each option with the clinical cardiologist and he said I would make the decision to stay on the medication or undergo surgery.