← Return to Which Mayo Clinic is best for obstructive hypertrophic cardiomyopathy?

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Profile picture for Debra, Volunteer Mentor @karukgirl

Hi MS @mshcm, that is wonderful question that other people may want to know.

The Mayo Clinic is a world leader in the diagnosis and treatment of HCM and HOCM.
It looks like you've posted here before, and it does take awhile to navigate around the Halls of Mayo, but let me try and answer your first question by asking you a question:
Where are you located?
Mayo Clinic Rochester, Minnesota is the main Mayo campus for Hypertrophic Cardiomyopathy.
We affectionately call it the "Mother Ship".

I am not sure if you have been to the Mayo website, but in case not, here is a link:
https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/symptoms-causes/syc-20350198
Take some time and read the numerous posts here in the HCM section. You will find many answers to your questions.

How wonderful that you have responded so spectacularly to Camzyos.
For many people with this condition it is an answer to prayer and a gift of having a life back again.
Read fellow member @boatsforlife and check out his insightful and inspiration posts. You will be encouraged and learn much.

Sadly, not all folks respond to this treatment and open heart surgery is the chosen course for them. Check out @brumasterj, an HOCM patient for whom Camzyos did not work and he ended up needing a septal myectomy.

One thing for certain...being treated at a Center of Excellence (COE), and/or treated by an HCM specialist makes a lot of difference in outcomes.

It did for me, and I can say I am ever so grateful and never looked back. Septal myectomy in the hands of a skilled expert, like the ones at Mayo Clinic, Rochester means a "one and done" approach, with the obstruction gone for good. No need for life long medications like Camzyos.
Open heart surgery. The very thought strikes fear into the hypertrophic heart of anyone, but I tell you the truth...the fear of the surgery is much worse in your head than reality.
Not fun, but certainly doable.

My advice is to read as much as you can, including here on Connect. These are people just like you who share this same weird condition and we all have our story.
Seeking a second opinion is a choice you can make, but I can tell you that in my case, when I had been misdiagnosed for several years, it took three outside opinions to get to the truth about what I had.
It saved my life in my opinion.
Since you already know, the mystery is not an issue...it may just be you needing a bit more confidence in your current physician, or reassurance you are on the correct path.
Either way, listen to your instinct and let it lead you to a conclusion you can feel confident in.
You are here on Connect, you are in good company. You're asking for advice and mine is learn as much as you can and read the posts here on Connect.
I asked previously, but again, where are you located, as you mention seeking treatment at Mayo Clinic in the US?

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Replies to "Hi MS @mshcm, that is wonderful question that other people may want to know. The Mayo..."

@karukgirl merci beaucoup pour tes conseils précieux que je prendrai en considération !

Je vis à Doha au Qatar