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Septal Myectomy Consideration

Hypertrophic Cardiomyopathy (HCM) | Last Active: 2 days ago | Replies (14)

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@mmicahk

@JustinMcClanahan Thank you so much. I appreciate all the information. I've spent the last 2 weeks researching, watching YouTube videos of Mayo/Cleveland Clinic surgeons speak, and listening to podcasts about septal myectomy. It really does sound like the procedure is best done under the care of those who are heavily experienced in this and at a COE.

I'm currently waiting for my second opinion within my health plan in a month from now and also by then I should have the statistics that Kaiser said they would send me on how many procedures they do a year. I haven't heard from the in-network surgery referral yet so I don't know when that appointment will be but I'm working on gathering all my information. I'm confident I'll be getting this procedure within the next 2 years and since my symptoms are minimal right now, I have the flexibility to present my case to my insurance plan to get this done at a COE.

I've read the posts about flying/driving home, which is what I'd need. It would be a 4 hour flight (hopefully nonstop) and then a 30 minute drive home from the airport.

What I haven't been able to find yet is if you need to go to Mayo Clinic for testing/appointment before the surgery is scheduled and the 3 day prior pre-op tests. It sounds like they run all the tests/scans again a few days before surgery, but are there any appointments at the facility needed within their facilities prior to that or do they take on your case based on your referral and medical records/test results outside of their facility? @karukgirl @brumasterj

Thanks for all your insights!

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Replies to "@JustinMcClanahan Thank you so much. I appreciate all the information. I've spent the last 2 weeks..."

Prior going to phoenix mayo they wanted all my records and imaging from the local hospital. Phoenix mayo then repeated their own imaging
I just talked with Rochester last week and they wanted me to be there a couple days early prior to surgery for Cardiac MRI whick i did last week in phoenix so they are good with that, the other thing they wanted me early for is to do angiogram to look for buildup in veins
I believe the surgery team will be answering all your questions
Just because they tell me one thing doesnt necessarily mean you will need the same.
After scheduling my surgery date July 11
They want me there 2 days before surgery
I was told to plan for 10-14 days
Hope this helps

Hi @mmicahk,
You're doing a terrific job of educating yourself! Way to go!
We flew out of Sacramento, SMF to MSP. MSP to RST. Got a shuttle to the hotel.
The second time we flew SMF to MSP and had a driver to the Courtyard Marriott directly across from St Mary's. This was for my open heart surgery.
Ours was a two and half hour drive (from the north) to Sacramento, then a four hour, non-stop flight from Sacramento to Minneapolis/St Paul. The flight to Rochester is less than an hour. It's about a two hour drive from MSP to Rochester.
I had three days of pre-op scheduled. The last appointment was for the angiogram at St Mary's (where the surgery is performed) and dang, they did not tell me I could not walk and had to use a wheelchair back to the hotel. It's because they went through the femoral artery. If they had used the radial artery, I would be able to walk. That's just a friendly heads up!
Mayo like to use their own equipment, so they don't really care about what your outside labs/xrays/scans/etc show. They will repeat their own. The bonus is the Mayo equipment is state-of-the-art, top-of-the-line, best of the best!
I got some news today from my friend that I mentioned who has Kaiser and her husband had his liver transplant at Mayo/AZ. He requires additional surgery for a bilateral inguinal hernia, and Mayo transferred his care to UCSF, and Kaiser is approving. That's good to know! They are in SF today and his surgery is scheduled for next month. April sometime.
Planning ahead like you are is so much better than being blindsided at a meeting learning you need open heart surgery for something you didn't even know you had! Good for you!!

In regards to testing before surgery, my home cardiologist sent all of my records to Mayo at the time I was referred. When surgery was scheduled for a Thursday 5 months later, I was there Tuesday and Wednesday for tests and interviews. Others may have different stories. I did not need to return after I was discharged after surgery, my home cardiologist "took over."