Which Mayo Clinic is best for obstructive hypertrophic cardiomyopathy?

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?

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

Je vis à Doha au Qatar

@mshcm , here is a link to Mayo Clinic International:
https://www.mayoclinic.org/international
They are very easy to contact and will be able to answer your questions.
The Mayo also has the London UK facility, and several other partner locations in Europe.
You are no doubt worried about this, I think we all were, especially when first learning about having it.
I was dumbfounded! I was so active! How could I have this? I don't have time for this! No!
Anyway, six years and open heart surgery later...I live with it just fine. I know my limitations, I test them a lot, and give myself grace for the things I used to be able to do that I can't do anymore.
You are listening to your inner voice.
Keep listening to that voice and your body. You are all you have that can do that!
Are you active and eating healthy?

I’m from Phoenix, so went to Mayo here when I found out I had HCM.
My Cardiologist there told me that he wanted me to go to Rochester Mayo to have my open heart surgery with Dr Dearani. Everything was arranged for us before we got there. Only had to have some final tests the day before surgery. My family stayed in an Air B&B close to the hospital and could Uber there.
The care I had was OUTSTANDING!
The nurses told me that patients came from all over the world to have Dr Dearani operate on them for HCM. I was released four days after surgery, flew home on day 6 to Phoenix.
I was told to start walking 5 minutes , 4 times a day.( I didn’t quality for cardiac rehab for some crazy reason)
So I set my phone for 3 minutes, walked down the street, turned around and walked home. After 5 days of this, I increased it to 8 minutes. It was definitely baby steps, but I kept it up 4 times a day and gradually increased it every 5 days.
Eventually I got up to 5 miles a day , still doing it four times.
In the spring we move to our cabin in the mountains where it’s cool. All summer I’ve walked five miles a day - 2.5 miles uphill, then 2.5 miles back down. It was a year since my surgery on September 26 and I have my energy back and feel wonderful. I have my life back. I’m 75 years old and feel better than I’ve felt for years.
Septal Myectomy surgery was scary, but for me not being able to hike and dreading going up stairs was worse.
I’d go through it all over again in a “heartbeat “, lol
Oh, another thing that helped me was loosing 40 lbs. I felt like it was time to take control and protect my heart the best I could.

@mshcm You received such excellent advice from all who responded to your post. I want to point out what my fellow mentor Debra @karukgirl wrote: "The Mayo also has the London UK facility, and several other partner locations in Europe."

I found this website https://www.scimagoir.com/rankings.php

I see you live in Qatar. As you consider where you will go for treatment, please pay extra attention to such things as visas for yourself and your companions. You deserve the very best care and Mayo in Rochester may be your first choice as it was for many of us; but I am afraid your possible plans may be put in jeopardy. Please add to your inquiry list to ask about this at the US Embassy or State Department. I am very sad and upset that we even need to think about this.

We look forward to learning about the next steps in your HCM journey - we will be looking for your updates.

I had HCM open heart for a serious septal block way back in December 2011 in Mayo, Rochester. Did not have this back then, but now they fix or replace the mitral valve at the same time while they're in there. I'm 80 now, and wish that was available then. Really helped me a lot. Flew home on connecting flights 7 days later (about 5+ hours). Took about a month for full recovery, but quality of life greatly improved. I'd get evaluated as a 2nd opinion in both Mayo, Rochester and at Cleveland Clinic. Do some research on success rates for what you need. Then decide. They will rely on their own tests, so 2 to 3 days testing is done pre surgery. You'll be very impressed about how everyone involved in your case is fully informed and updated. Quality of life still really good for me. PS. Rochester in winter is bitter cold, but there are hotels across the street from the hospital, so it was easier to handle for me. My surgeon retired, but I think both places have a top notch medical team for surgery, nursing and pre discharge recovery.

@walkinggirl je vis au Qatar mais j ai un passeport européen plus précisément français j ai déjà le visa pour entrer aux états unis. Merci d avoir relevé la question qui peut être pertinente pour certaines personnes 🌹

I was in the trial for Camzyos prior to FDA approval. Dr Geske at Mayo in Rochester ran the test. I believe there isn't a Dr in the world that knows more about Camzyos that he does.

@mbi I just wanted to add that I had my Septal Myectomy with Dr Rowse at Mayo Rochester and he and his team were top notch. I had no complications and I went from record pressure within my heart to having none. I couldn’t walk a block or go upstairs without losing my breath and now I can walk for miles nonstop. Great team!

I had sudden cardiac arrest and had an echo at Mayo in Rochester, Mn. My Cartiologist was top notch and could tell what was wrong just with his stethoscope. I was told that I need an alcohol septal ablation immediately or I would die again. The surgery went very well and Im thankful that I went to Mayo in Rochester, Mn.