Septal Myectomy Consideration

I heard back from Mayo Clinic today and they agreed with my provider and said that I will need a transaortic and transapical septal myectomy. They're going to provide me with a letter on the benefits of having this done at Mayo Clinic and it will be back on me to work with my healthcare provider to get the approvals. They said I'm going to need to find a cardiologist at Kaiser that will refer me to Mayo Clinic.

It will be a long road it seems still, but I have a goal of sorting this out (or having a new health plan) for having the procedure done maybe summer of 2026.

I have a feeling I'll be spending the coming months waiting on answers and submitting requests to Kaiser. It may need to have a peer to peer evaluation and a medical review board process. So this will be a test in patience. The good news is that aside from my fairly constant fatigue, I'm relatively symptom free.

I'll be meeting with HCMA later this week as they may be able to help guide me through some of this. I am awaiting documentation from Kaiser on how many procedures they do a year and when I called today to make an appointment for my in-network surgical consult, they told me my cardiologist never put a referral in. So I'll be dealing with that next.

I was secretly hoping that Mayo Clinic would review and tell me that my cardiologist was off base and that I don't need surgery, but seems that is not the case, so today has been a day feeling defeated. Tomorrow is a new day.

If you have time to look around this site you will see my post of what i have dealt with for years before being diagnosed with HCM with severe LVOTO
My symptoms would appear during workouts
So after two back to back heart failures a few months ago i finally went to mayo
They said i was a great candidate for septal myectomy
Put my on camzyos to get me feeling better
Surgery is scheduled for june:)

Please feel hopeful because you are taking action and getting to the bottom of this. Of course, you wanted to hear that no surgery was necessary (everyone who is part of this wants to hear that!), I assure you that you will be in the best hands at Mayo! I was 75 when I had a septal myectomy. At age 44 you have many, many years ahead of you to enjoy the results of your surgery. Keep in mind that insurance companies are a pain in the _ and a reflection on what is best for them, not you. You definitely want to go to a COE (Center of Excellence) such as Mayo. Where do they want you to go?

For anyone interested, my story continues.

I spoke with HCMA and they suggested I be seen by a COE clinic first, before considering surgery. There are strange things going on with my case and some of my scans (like varied thickness from scan to scan) and I still haven't had a cardiac MRI.

Sounds like Mayo knows I'm a "candidate" for surgery, but since we haven't really discussed with anyone and my symptoms are fairly low, there's a lot of questions still that I should be considering.

My cardiologist at Kaiser now told me that he doesn't think I need surgery now (he was even wavering during my last appointment), but he's the one that brought it up in the first place.

I am admittedly frustrated because I'm limited to who I can see due to my insurance. I'm willing to pay out of pocket to see a COE for a full review, but I need a referral for that. Tomorrow I will be asking my primary for that and if he won't (or can't due to Kaiser), then hopefully HCMA can help guide me.

Did anyone else get diagnosed without cardiac MRI and only echos?

Yes the cardiac MRI is the very last thing i had done!
I was diagnosed with HCM in December, mayo said i was great candidate for septal myectomy and before surgery i would need a Cardiac MRI
This was done In March and myectomy is now scheduled for june.
You said your wall thickness varies from one echo to the next, i know with obstructive HCM there are things that can make it worse, lack of hydration, large meals, and the list probably goes on! I know hot chili food would make my heart murmur appear!
Dont loose hope, be patient and allow your insurance to try and get you to the COE

I had my first cardiac MRI during the 2 days of tests and interviews immediately before my scheduled septal myectomy. Echoes were used over the 10-15 years from when HCM was diagnosed. One of the effects of HCM is (rarely) sudden death such as with athletes and others who are in otherwise excellent physical condition. A full review at a COE for HCM would be an excellent thing to do in planning your future treatment!

@brumasterj @walkinggirl
Thanks! Those I spoke with at HCMA were surprised a cardiac MRI had not been ordered yet. Maybe it was because there were talks of surgery.

Spoke with my primary doctor today and he told me to talk to my second opinion cardiologist about referrals. HCMA said they’ll look into my options too.

I have a sense that I’m going to need to pick a new health plan next year and that Kaiser just isn’t going to be the right plan for me in the long run given the specialty needs. Frustrating because the care has been pretty good up to this point, even when I was hospitalized with sepsis last year.

The research yku have done will definitely help you with living with HCM
Listen to your body and seek medical attention if your O2 starts to get too low
I hope you can get to a COE soon!
Keep us posted on the progress
Prayers for sure!

If i remember right they did want to do the cardiac mri back in dec but they said there was so many people having it done that it would be a few months before they could get me in.
They got me in March
And basically the Cardiac MRI comfirmed the same thing the Echo showed

Update on my case. I contacted HCMA and they gave me some sound advice. They explained that I should probably be seen by a specialist in HCM before making any decisions on surgery. They also said that it was suggested by Mayo that I have a Transaortic and Transacpial procedure and there are a lot of questions I should ask on why the double opening vs. the standard for my case. I would love to be seen by Mayo but with my insurance, that is a huge out of pocket investment at this time, so I've looked into other channels. Ultimately if I get surgery, it will likely be at Mayo and I'll change insurance.

HCMA suggested there are other therapeutics to consider attempting first for my case and although I may ultimately need surgery, I should have a specialist work with me to help make these plans. They did some digging and found that the cardiology directory at Kaiser Santa Clara was trained at Stanford and highly recommended by one of the head NPs at Stanford's HCM clinic. So I was able to get a consultation with that cardiologist in June, within my network and not having to pay out of pocket like I was going to in order to see Stanford's HCM clinic.

I've made a decision, unless things change with my health, to slow down on the surgery road for now. Give it a few years, see if things change with my diagnostics, see what therapies are available with the number of clinical trials going on, and then make a decision from there. My quality of life isn't super impacted at the moment and even Mayo said there is no rush, only when I'm ready. So while March & April felt like a whirlwind, I've calmed down to take my time. I feel fortunate that I have that ability with my case, at least for now, because we know HCM can change and become more symptomatic.