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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mmicahk | @mmicahk | 1 day ago

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.

REPLY
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brumasterj | @brumasterj | 13 hours ago

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:)

REPLY
walkinggirl | @walkinggirl | 12 hours ago
In reply to @mmicahk "I heard back from Mayo Clinic today and they agreed with my provider and said that..." + (show)
@mmicahk

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.

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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?

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