Freaking out a bit - Upcoming surgery!

Posted by badmac @badmac, May 29, 2019

I was officially diagnosed with HCM about 3 years ago, however i have been feeling the symptoms since childhood. I always felt something was wrong, and been to the cardiologist many times and they didn't find anything until about 8 years ago, a very pronounced murmur appeared and they were looking into what was causing it. They didn't diagnose me then, however they wanted to keep an eye on the murmur, so every year i get an Echo. 3 years ago they found the HCM, and this year it is now considered obstructed, which i believe is HOCM? My cardiologist said i will need a myectomy. This next monday i am headed to the cath lab for them to take a closer look. Not sure what happens next. I'm freaking out. Been reading other posts, trying to learn more about the surgery and what to expect. Sounds like this is an open heart procedure? I think that scares me most. I am 51 years old. Over the last couple of years i have really slowed down, and get fatigued quickly, chest pain, strange heart beats and sensations. And over the last few years i have been dealing with severe anxieties because of this. I am on a few meds for the HCM as well as other meds for diabetes. Is this an open heart procedure? Thankfully i live in the phoenix area, so there is a mayo clinic here. A few years ago, i never heard of HCM. Up until a week ago, i didn't know they could surgically treat it. there seems to be lots of peoples stories here with some great information. Some of it is scary and most seems to be positive. Not sure why I am posting, but when i describe this to my family, they don't seem to understand this is kinda serious. I guess i just needed to relate to someone who understand this.

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

My husband had HOCM and five blockages. He had his surgery nine months ago today, and I can’t begin to tell you the difference. The first two months he felt very little difference and questioned everything he went thru. Now, he would do it again knowing how great he feels. A year ago he was exhausted just coming in from the driveway. Mayo is the best for this condition, surgery. The staff is so fabulous I can’t rave enough about them. Get it done and move on with life.

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Had mine on Jan 30th along with a mitral valve repair You will be fine Your got this Good Luck

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Had the cath lab Monday night. its official, I need a myectomy. Now I need to find a surgeon here in AZ. My cardiologist is checking. Any recommendations? I am hoping the Mayo has a specialist here in AZ.

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My husband went to mayo Rochester because if the number of surgeries they perform.

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Badmac....if there is any way you can go to Rochester Mn that is where you should go. A Cardiologist here told me if I were his patient (went to him as a second opinion) he would send me there. He went so far as to say Not Florida, Not Az...ONLY Mn. THEY are the experts. You COULD check with the Az Mayo and ask how many of the Myectomys they do a year. If it's over 200 you are probably good.

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Great answer, my husbands cardiologist here in San Diego actually recommended Rochester.

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Hi @badmac,

If you’d like more information or would like to make an appointment at Mayo Clinic, please call one of our appointment offices – you can also request an appointment online – and representatives will ask a few questions to help direct you to the best specialist.
The contact information for all 3 Mayo Clinic locations (Minnesota, Arizona, Florida) can be found here: http://mayocl.in/1mtmR63

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Hi @badmac,

I can imagine you must have so many questions about undergoing surgery, and thought you might be interested in reading these Connect discussions where members ( @ronaldpetrovich @dp52350) have shared some great insights and experiences:

– Septal Myectomy & Mitral Valve Repair Surgery on Jan 30th https://connect.mayoclinic.org/discussion/surgery-on-jan-30th/
– Notes from presentation by Dr. Joe Dearani re: Myectomy https://connect.mayoclinic.org/discussion/notes-from-presentation-by-dr-joe-dearani-re-myectomy-at-hcm-summit/?utm_campaign=search
– HCM CARE tips – What do you wish you had known for after surgery? https://connect.mayoclinic.org/discussion/hcm-care-tips-what-do-you-wish-you-had-known-for-after-surgery/

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@sheim I would like to go to MN however my insurance will play a big part in where I get the surgery. They want me to get it local (as per a conversation I had with them). They did say that if no one local did the surgery then they might let me travel to MN to get it. So I have to check local first.

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Hi Badmac, I don’t know how old you are but if you are over 65 Medicare pays for surgery no matter where you go. You will be responsible for travel etc

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