Septal Myectomy Consideration

Well you found the right place!
Im 57 yr old male and noticed i was having difficulties about 8 years ago with my running and biking. I would have good days then i would have days where i could not run 1 mile
At the time it was not uncommon for me to do a 30+ mountain bike ride or go for a 5 mile ride.
The good days got less and the bad days got more!
I would talk to my doctor about it and they said it was either something in the air or i may be having exercise induced asthma and i was getting up in age to consider slowing down some.
I finally quit running and just stuck to bicycling.
On some of my bike rides i would be so fatigued i knew something was wrong i would tell my doctor it felt like i had a hole in my heart that i feel like im not getting blood to my legs and felt like i was suffocating
Well oct i went on a bike ride and struggled couple days later i was in the hospital they said i had pleurisy and pneumonia
Gave me steroids and antibiotics sent me home
30 days later went on a short 5 mile easy bike ride, ended up in ER that night O2 was in the 70’s admitted me for 3 days ran a stress test on me said i had heart failure
Gradient was 122mmHg
At that time my wife talked me into going to mayo
Diagnosed with HCM with severe LVOTO
Rexommended septal myectomy but said lets get you started on camzyos to get you feeling better.
3 months on camzyos now
Bike ride in Jan 136 miles
Feb 140 miles
I have not done that distance in years!
Im scheduling surgery in June because my gradient is still at 38mmHg provoked

I would say if ukur active and they feel you need surgery consider at least camzyos to see how you respond! You can always do surgery later!
But dont wait till you go into heart failure like i did!
I wished i knew all this before i had the heart failure

I know this is long and i hope it helps
.

This is really helpful to hear your story, thank you so much for sharing. I'm an active guy who is at the gym 5-6 days a week. At least 30 min of cardio and 30-45 min strength training, certified (but not practicing) as a personal trainer.

I got Covid last year in Feb 2024 first time, went to urgent care (on the advice of my wife) after covid recovery because I still felt really bad. Urgent care made me aware of a murmur that had never been heard before.

Fast forward a few months of worry and an echo confirmed HOCM with LVOT around 60mmHg at the time. I continued to have fatigue and little chest pains, but nothing major. Then in November 2024 I ended up in the hospital with sepsis (from a sinus infection some of the doctors think). The Echo while there showed a higher gradient but I was under significant heart stress with the infection.

They finally did a stress echo a few weeks ago and my gradient was still at 70mmHg with activity. Unfortunately my resting HR is between 40-50bpm on metoprolol so there isn't much room to lower my heart rate more via medication. So while not urgent I was told that surgery is in my future due to the high likelihood of symptoms starting up more in the next few years. I mostly am still having general fatigue with the minor chest pain/palpitation feeling once in a while. No arrhythmia though.

Being so young still, catching it early, and with two young children that keep me busy, I am considering getting this done earlier than later so that I can worry less with the years ahead. I really don't want to wait until a major episode if I don't need to.

I am so thankful to have found this group.

I also think I have a battle ahead though of trying to get this approved with Kaiser because I'd like to go to a COE like Mayo Clinic.

Sounds like we have had a lot of the same path leading into this.
What is your resting gradient?
Mine was 48mmHg
Now its 10 with camzyos
I was told that HCM is what you hear of young football players and basketball players dyeing from!
I played contact sports and remember my heart racing away for hours and would never tell anyone for fear of not playing!

Symptoms i had early on too was after eating a meal i could not go exercise at all in fact if i knew i was going on a bike ride i would not eat till afterwards!
Drinking a beer and trying to do work around the house would not happen either!
Walking up hill after a meal or after drinking was challenging as well!
I would highly suggest going to mayo or big teaching hospital about your conditions!
I was told that there is only a handful of surgeons that can do this surgery effectively and two of those surgeons are at rochester.
My hospital tries metropolol and verapamil on me after my heart failure neither one worked!
Not sure if i mentioned this earlier but my mayo doctor said i had had several heart failures, basically every time i was having issues with my workouts was a heart failure which is the hearts inability to move enough blood thru the body!
Talk to your dr about camzyos vs surgery
Also HCM is considered to be genetic so Mayo will do a genetic testing as well
This may qualify your first line for genetic testing to see if they have the gene

Camzyos has been proven to keep people from having surgery.
The protocol to stay on camzyos is huge!
1st 3 months echo each month
If you do well then they move it to echo each qtr for 1 year
If you still do well they do echo twice per year!

Its expensive for me to drive to phoenix every month 450 miles 1 way stay 1-2 nights in hotel then drive back home!
Plus camzyos is expensive
$9000 per month
But mayo helps find ways to make it affordable
My insurance picks up $8800 per month dollars and camzyos gives you a copay card where they pick up $90
So i pay $10

In my case camzyos has given me my life back while awaiting surgery!
Dont hesitate to reach out for more questions

Wow, thanks for the extra info. My resting gradient is 50mmHg, from the echo before the stress echo, and they want me below 50mmHg when exercising, so I'm already in the range of needing some sort of further intervention.

I was told the same thing about young athletes and I was involved in activities for hours on end in the summer heat that make me surprised I didn't know about this earlier.

My most recent noticeable symptom that just started is I get a little winded walking up two flights of stairs at my gym. I never did before and that has been noticeable the last month. I don't have stairs in my house, but I always walk up those stairs and a stair master machine and never felt winded like that. Chest tightness once in a while and feeling of palpitation once in a while. The 30 day heart monitor hasn't displayed any issues though with those symptoms but that was a year ago. I'm now on a 14 day monitor right now after some chest tightness last week and a visit to the ER to make sure nothing bad was happening.

Kaiser has been pretty good with the diagnostic portion of this whole thing (echo when murmur was found--without question, cardiologist followups, heart monitor, medication, genetic testing, and echos for my kids). All of this was covered and happened pretty quickly without any pushback.

Kaiser told me that they have two surgeons in Northern California that do the procedure, but I have a lot of questions (thankfully from reading through this group) that I am asking. If I'm not comfortable with their expertise, I will need to build a case on why I need to go to Mayo. It may be an uphill battle but since it's not urgent right now, I'm getting second opinions, talking to their surgeons, and getting my paperwork in order. Realistically, they don't specialize in HOCM or septal myectomy so I'm certain I want to explore outside options. I have an excellent Primary Care Physician who has been going to bat for me all along and I hope he will help me through that process.

My cardiologist did talk to me about Camzyos and Kaiser is part of the program to prescribe. Since I'm not very symptomatic though, we talked about all the related expense and follow up echos, etc. He didn't seem to think that med was the best option for me at this time, but was something to consider.

Sounds like you're getting pre-op care in Phoenix and then surgery in Rochester?

I'm glad that camzyos is giving you your life back while you're waiting for surgery and that you're getting the help needed from such a great providers.

I'm really in a phase of wanting to get this taken care of before any major symptoms occur. My cardiologist basically told me more symptoms will very likely happen at some point, it's just a question of when within the next 10 years, unless a major episode happens beforehand. I'm super proactive with my health and hyper aware of feeling things (that's how I caught the sepsis I had hours before the hospital--they sent me home and I was back a few hours later back in November).

Your story hits home with me because it does give a perspective of what could happen waiting 10 years or so--though I know everyone's progression and journey is completely different.

You have some time to process all this!
Listen to your body, stay hydrated is a big one.
Yes will happen in Rochester for surgery.
Have they told you the thickness of your septal wall?
Mine is 18mm normal is 10mm
Like my mayo dr said there are alot of facilities that say they can do this surgery, do not believe them!
There are only a handfull of drs that can! His words not mine:)
In 2022 i went to the emergencybroom after not being able to complete a easy 3 mile walk! Something was wrong i couldnt catch my breath
After running test and EKG
My resting gradient was 22mmHg they did not dona stress test at that time, had they done thebstress they would have saw i had exercise induced LVOTO
The released me and said i had mild cardiovascular disease and put me on carvedelol, this has a beta blocker with diaretic
Diarectic are now bueno for HCM patients!
My mayo dr said carvedelol exasperated my symptoms!
I had been telling my local cardiologist that it made my symtoms worse while exercising and he said i needed it to help dialate my blood vessels!
It sounds like your getting great care where ykur at
But a second opinion is always good to have!

Oh by the way they had me wear monitor for 30 days and it never gave them any data that indicated i had heart issues!
Thats because they (my local hospital) was uninformed about HCM

Oh and yiu said your not very symptomatic 50mmHg resting is considered severe
Again i would seek another opinion!
Not sure where your located bit reach out to mayo
Your here for a reason:)

@mmichak, Welcome to Mayo Clinic Connect.
I am so glad you found this site and have shared a lot of your backstory here. It is helpful to learn from others here on Connect.
We can't offer anything in the way of medical advise, we are people/patients with HCM and HOCM, just like you. But we have experiences we can share and stories that may help you as well.
You sound like a super athletic young man with a long history of good healthy choices.
I would encourage you to learn as much as you can about this, so you can be your own best advocate. Have you read this from the Mayo Clinic?
https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/symptoms-causes/syc-20350198
You are right to be concerned about being treated for HOCM at a COE (Center of Excellence) for a septal myectomy. This procedure is so precise, so importantly done by a skilled surgeon, you really want to know your options. Kaiser is not on the list according to this informative website:
https://www.4hcm.org/center-of-excellence
I found this online as well for US hospitals:
https://health.usnews.com/best-hospitals/rankings/cardiology-and-heart-surgery
And this for top hospitals in the world:
https://www.newsweek.com/rankings/worlds-best-specialized-hospitals-2023/cardiac-surgery
And I also found this site, although I have never heard of Beckers Hospital Review, just saying, but it did list some California hospitals.
https://www.beckershospitalreview.com/cardiology/top-50-hospitals-for-cardiac-surgery-healthgrades.html
California
Adventist Health Glendale
El Camino Health-Mountain View Hospital
Kaiser Permanente Los Angeles Medical Center
Kaiser Permanente Santa Clara Medical Center
PIH Health Whittier Hospital
Ronald Reagan UCLA Medical Center (Los Angeles)
UC San Diego Medical Center
These are top hospitals for open heart surgery.
You want a top hospital for sepal myectomy.
That list is much smaller, and you are right to want the best. Not the closest or most convenient for your insurance.
You have an important role in the lives of your kids and want to make the best choice for you, not anyone else.
I confess, I do not understand how Kaiser works.
I think they want you to stay in their network, and work only with their doctors. Which is fine, but when you are talking about something outside their expertise, I am not sure how it works.
I can share that I have a dear friend and her husband in their early 40s, who have Kaiser from the Auburn, CA area.
He got very sick, very quick and ended up needing a liver transplant. She was able to work with Kaiser and the Mayo Clinic in AZ for his treatment, and he had his transplant four months ago in AZ. Kaiser was good with their treatment plan. But it was a battle, and in the end worth the fight.
I would not let distance or convenience be my decision maker. You are right to be concerned about waiting. I was misdiagnosed by my local cardiologist for several years. I believed everything he told me, but by the time I had my open heart surgery in Rochester, my heart was enlarged, failing and I had almost no life. It happened pretty quick. Like a few years. I was a big time hiker/walker/dancer/motorcycle rider...and I could barely tie my shoes without gasping for air. I was in my late 50s when this happened. I had surgery at 62.
I am not trying to scare you! Just want you to have as much helpful information as you can process! Take your time and digest all this. Mayo Clinic Connect is here for you!
When is your next appointment with the cardiologist???

@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!

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.

@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!

Prior going to phoenix mayo they wanted all my records and imaging from the local hospital. Phoenix mayo then repeated their own imaging
I just talked with Rochester last week and they wanted me to be there a couple days early prior to surgery for Cardiac MRI whick i did last week in phoenix so they are good with that, the other thing they wanted me early for is to do angiogram to look for buildup in veins
I believe the surgery team will be answering all your questions
Just because they tell me one thing doesnt necessarily mean you will need the same.
After scheduling my surgery date July 11
They want me there 2 days before surgery
I was told to plan for 10-14 days
Hope this helps