Septal Myectomy Consideration

@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!

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!!

@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!

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?

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!

@karukgirl I really appreciate all you shared, this is so much helpful information. I totally understand that no one here can offer medical advice and really just appreciate everyone's knowledge having gone through different pathways themselves.

I have always been a huge advocate for my health and lead a fairly active lifestyle and make (mostly) healthy decisions for nutrition. My dad passed when he was 46 from a blood clot/heart attack post-surgery and I've seen what can happen from not taking care of yourself for so many years. My goal is to be an active grandparent one day for both of my kids and lead a long healthy life with my supportive wife.

Your points make a lot of sense about not just being a top cardiac hospital, but a top hospital for septal myecotmy. Kaiser Santa Clara is where my referral is within Kaiser for surgery, so at least that's in that one link and I will meet with the surgeons there. Though like you said, they may not be experienced in septal myectomy. I've actually already asked their member services for statistics on how many of this procedure they perform a year at the hospital, in the region, and at Kaiser as a company. They said they'll mail me the information in 30 days or so. Seems like they are holding that info close, but it is critical information for patients to know!

Thanks for your story about your friend in Auburn. They live only about 20 minutes from me, so we're in the same "medical system" with Kaiser. I'm glad to know that Kaiser has approved Mayo Clinic for other patients with other conditions. I am preparing for the battle ahead with them, mainly in a fact finding stage right now to get my paperwork in order to present a case on why I should have this performed through Mayo Clinic.

I just want the best care, regardless of location and that's how I've landed here speaking to all the amazing people in this group.

I have my next cardiologist appointment in mid-April, with a cardiologist at a different Kaiser location for a second opinion. I've been getting a second opinion each time I see my cardiologist as I want to make sure that I am understanding everything correctly and to make sure nothing goes unchecked. I am so thankful that my case (at least as I understand it) isn't urgent, so I have time to figure this out and work on presenting my case to Kaiser on where and why I'd like the surgery performed. I know not many have that opportunity. However, I do not want to wait too long. Already there was increased hypertrophy in my septal wall from one year ago to last month (that was only 10 months between) after reading both my first echo and my stress echo. So I'm hoping within the next two years.

Don't worry you didn't scare me. I totally understand everyone's story is different and the progress of this doesn't present the same for everyone. That sounds like you had a really challenging journey yourself through misdiagnosis to near failure within a few year period. I'm so glad you got the care for this and are here to help guide people like me with your story.

I have read that a lot of people experience the most dramatic symptoms once they hit later 50s and early symptoms (when no intervention was done early). Even my cardiologist said I have a good 10 years before some big symptoms start showing up because we caught this so early. Since I'm fairly young still and very proactive with my health, I am of the mindset to get the procedure while I'm in some of the best shape in my life, so I can continue that way moving forward.

Thank you again for the research links and information. This is all so very helpful as I continue my research and build my presentation to the insurance company on why I feel best out of their network in this case. Otherwise, Kaiser has been phenomenal for me--fairly quick appointments, diagnostics approved and scheduled very quickly, hospital had amazing care when I had sepsis last year.

Thanks again!

Just wanted to add this experience from myself.
You mentioned ykur doctor said you have 10 yrs not sure how he came up with that number?
Thinking back i had some symptoms dating all the way back to HS football, after HS i dindnt have alot of symptoms only if i had not worked out in a while and then try to get after it.
It wasnt till my mid 40’s that my symtoms got to where they were affecting my workouts, not every workout but as time went on by the time i hit 48-49 i gave up on running and just focused more on biking!
The runs was just getting to difficult to do anymore.
I noticed my bike rides were getting harder as well
So listen to your body if you get to where you have several good workouts with no issues, and a bad work out from time to time your probably ok, its when the bad days show up more than your good days!
Of course that was one sign!
Here are a list of other signs i was having
Hills, ladders squats i would get light headed
Hills or inclines i do live in high elevation so walking out a restaurant usually meant inclines after eating a meal or after drinking alcohol.
Working in hot weather
Getting up from sitting and feeling lightheaded
Again in 2022 my resting gradient was 22mmHg
They did not do a stress test!
Two years later after exercise induced heart failure resting gradient 48mmHg stress 122mmHg

Again hope this helps and listen to your body!
No one knows your body like you do!

Honesty, I don't know how he came up with 10 years either. It's a blur but I think he said 10-15 years. I'm getting a second opinion for this all as well. My thinking is that if I need to get this in the next decade, why not do it when I'm at my youngest fittest time so that my healing is faster. I have no clue what state I'll be in 10 years and while I don't take this decision lightly at all, I am leaning toward earlier than later.

Generally, I feel mostly fine during my workouts. Only more recently, I've had some minor chest pain/palpitation and some minor lightheadedness with more rigorous exercise. It's one of those things that I wonder "am I just working out too hard" or "is this HOCM".

The stress test showed a resting LVOT gradient of 50mmhg at rest and then with exercise he said slightly above 70mmhg. The tech noted as 233mmhg with exercise, but cardiologist said with analysis it shows much lower.

I notice that when I walk up stairs (2 flights) I get winded where I never did before. I don't know if I'm overanalyzing myself though. My workouts are pretty good although I'm obsessively checking my heart rate to make sure I don't get too high.

It seems that at this time, my body may be symptomatic with higher pressures with exercise, but I'm not necessarily having extreme symptoms that would have caused me to question, if I weren't aware of my HOCM.

They've cut back my metoprolol for now to only 12.5mg a day, time released for now because I was having high fatigue with the medication.

The problem is that my resting heart rate was 40-50bpm with the 25mg and after seeing the stress induced pressures, it didn't give them much room to increase the medication before me going into bradycardia.

So I'm at the stage where I'm going to get a second opinion on all of this. I know Cleveland Clinic does a virtual second opinion. I'm looking into Mayo Clinic's second opinion options, which seem a little less straightforward.

I'm also doing my second opinion with Kaiser Permanente next month and speaking to the surgeons there and getting member services to give me the numbers of procedures they do a year. It's going to take a long time to build my "case" on why I should have this done at a COE. Or I'll need to cancel that plan, switch to another plan for my family, and start halfway with finding new doctors and getting the referrals. I am fortunate to have the time to sort this out, but it's a journey that is taking up a lot of my headspace right now.