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Septal Myectomy Consideration

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

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@JustinMcClanahan

Hello @mmicahk,

You ask a lot of really good questions about someone facing a new HOCM diagnosis. Doing your due diligence is a great place to start and @brumasterj has shared some really good firsthand experiences with you @karukgirl provided some great resources as well. I'd also like to share a conversation started by @freedancer69 titled:

"I am Having a Septal Myectomy"
- https://connect.mayoclinic.org/discussion/i-am-having-a-septal-myectomy/

This conversation may be a bit forward as it is someone facing the surgery in April, but may offer some good insights on what it is like to be a bit further down the road in the diagnosis progression.

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Replies to "Hello @mmicahk, You ask a lot of really good questions about someone facing a new HOCM..."

@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!