Septal myectomy x2

Posted by twentythree @twentythree, Dec 27, 2024

New to this group.
Has anyone in this group had to have a second myectomy in the Apex. As well as an aortic valve replacement?
Im looking at this in 2025. Im 67 yo. This may not be all of it either, as I will need to have to mitral valve replaced soon after. Just want to know-
1. Recovery, was it worse or about the same as first?
What did you do differently from first time that made second time easier?
2. Should I try to Insist on both replacements valves at the same time?
3. Anyone go back for a third myectomy?

Right now, not critical, but trying to base a decision of when to move on this or not at all.
I don't have a death wish, but 3 open heart surgeries are not a wish either.
Doctors at mayo have been very helpful on the technical questions and encouragement to do this within a year.

Thank you all in advance for your suggestions and comments.

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

Debra, Volunteer Mentor | @karukgirl | Dec 28, 2024

Hello @twentythree, and welcome to Mayo Clinic Connect.
What a story you have there! As is if one open heart surgery isn't enough, you get two! Have you had a chance to look around here on Connect? There are a couple of members who have had to have a second open heart surgery for HOCM. I am not certain of the location of the obstruction, however.
@dbrima has shared her journey here, if you get a chance you can read her story and reach out with any questions you may have.
You ask some really good questions! I had my open heart surgery at the Mayo in Rochester and like anyone would be was freaked out about it! I asked for tips on all sorts of things and got some great responses. Like a lounge bra for post op comfort and slip on shoes. I was so glad I knew that! I also had my surgery in July, so sun dresses were easy.
Now as far as if I had to have a second surgery? Geesh! What a thought to ponder!
Since I have not had a second I can only guess it would be like the first?
Tough.
But we are tougher! And dare I say even braver the second time.
In my case my mitral valve looked like it was going to be replaced and done at the same surgery. However, when they got in, the valve was not as bad as it appeared pre-op, because the HOCM was so severe. But they did plan to do both at the same time.
Hopefully any members out there who have gone through open heart surgery twice will pop in here and respond.
Until then, will you be going to a Center of Excellence for this?
That is very important. For two of our members having their first done at good hospitals was not good enough and both ended up at the Mayo.

twentythree | @twentythree | Dec 28, 2024

In reply to @karukgirl "Hello @twentythree, and welcome to Mayo Clinic Connect. What a story you have there! As is..." + (show)

@karukgirl Thank you for the reply. Good information. I’ll take a deeper look into the past posts.
I had my last surgery at Mayo in Rochester and will again for the next. Excellent care indeed. I do/ did have HOCM. Out of all people that have myectomy only 1% will have a second. Lucky me!! Id rather be winning the lottery with those odds!! To make me more special, in my first surgery they found an anomaly of a 3rd papillary It was more enlarged and causing more obstruction than the enlarged area on the septal wall.
My local doctor recommended me to the Mayo. We just don’t have that type of expertise in this area. I feel comfortable that I’m in good hands.
I’m in relatively good health and have been taking care to stay that way. Just knowing what to expect the second time around will help me plan like I did the first time.

Thank you, wishing you the best. Yes we are tough!

walkinggirl | @walkinggirl | Dec 29, 2024

Thank you, Debra, (@karukgirl) for remembering @dbrima's second septal myectomy story for twentythree and others to review. (I remember her posts, full of courage and determination, but it would have taken me a while to locate those posts.)