1. < Hypertrophic Cardiomyopathy (HCM)

Septal Myectomy Consideration

Posted by mmicahk @mmicahk, Mar 3 3:35pm

44 year old here. About a year ago I found out I have HOCM and recently after a stress test, my cardiologist was recommending septal myectomy. He didn't seem too concerned about timing because I am not really symptomatic at this time, but said based off my stress test numbers, he suggested that I would "probably" need to get this before 60 years old. I'm healthy and active right now and am more concerned about waiting to see what happens in the next 10 years. I was wondering if anyone else had to weigh the options of waiting until symptomatic or getting it done before symptoms arise.

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Mentor
Debra, Volunteer Mentor | @karukgirl | 3 days ago
In reply to @mmicahk "@JustinMcClanahan Thank you so much. I appreciate all the information. I've spent the last 2 weeks..." + (show)
@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!

Jump to this post

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!!

REPLY
1 reply
mmicahk | @mmicahk | 3 days ago
In reply to @karukgirl "Hi @mmicahk, You're doing a terrific job of educating yourself! Way to go! We flew out..." + (show)
@karukgirl

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!!

Jump to this post

This is incredibly helpful, because that is exactly the airport I'd be flying from/to. I'm about a 30 minute drive from SMF.

Woah, the pro-tip is amazing about the angiogram. I figured about all the pre-op labs/scans/etc needing to be redone. I am still unclear how I get a referral but I'm guessing after approval from Kaiser I'd be figuring that out or they would be organizing for me.

Wow that is amazing that Mayo was able to get Kaiser to transfer and approve for your friend. I feel like there's hope now. Much luck to your friends during the procedure in April. I'm sure he's in great hands at UCSF.

I know I've said it a number of times, but I'm really thankful to know ahead. Only a year ago I learned I had a murmur, then last April got my diagnosis and at that time I was told surgery likely wasn't going to be needed in the future for my case. Fast forward a year and that picture changed--I didn't think it was something I'd even have to be talking about, but here we are.

I'm glad this group exists and there is so much to learn from everyone here. I feel I'm impatiently waiting at this point but I have to remind myself I just learned about needing surgery 2 weeks ago and there is a journey ahead leading up to getting the procedure.

Thanks all!

REPLY
mmicahk | @mmicahk | 3 days ago

I thought of another question for those who had their septal myectomy. I know everyone's healing is different. I sit at a desk for my job and have my own business. How long would you all recommend I plan to be out of commission. I know there is no driving for the first month and likely very uncomfortable during that time so figured I'd be at least 1 month out of work, maybe the second month half-time? Any thoughts around this?

REPLY
walkinggirl | @walkinggirl | 2 days ago
In reply to @mmicahk "@JustinMcClanahan Thank you so much. I appreciate all the information. I've spent the last 2 weeks..." + (show)
@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!

Jump to this post

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."

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