1. < Hypertrophic Cardiomyopathy (HCM)
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How to decide whether to take Camzyos or have surgery?

Posted by doctorboo1 @doctorboo1, May 19 11:56am

I have recently been diagnosed with obstructive HCM. My doctor is pro-drug treatment but after reading about the surgical option, I wonder if drug is just postponing the inevitable. I'm 79, and was still an avid cyclist, hiker, walker, swimmer, etc until this hit. Basically, I refuse to change my lifestyle, much, and wonder if getting surgery is ultimately a good option. It sounds like it is usually successful. I sure don't want to wait until I decline in fitness etc.

Interested in more discussions like this? Go to the Hypertrophic Cardiomyopathy (HCM) Support Group.

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sassyrdh329 | @sassyrdh329 | 3 days ago
In reply to @doctorboo1 "@walkinggirl Thank you, Linda. I am scheduled to see a cardiologist at the HCM center at..." + (show)
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@walkinggirl
Thank you, Linda. I am scheduled to see a cardiologist at the HCM center at UTSW in Dallas on June 1. Just hate the waiting!
I've personally decided if the surgery is planned I want to have it done at Rochester.
With my Midwestern roots, I have great trust in Mayo's, plus have family nearby and one who works there. Right now its just the frustration of waiting and getting the process underway.

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@doctorboo1 can anyone go to the Mayo Clinic if they choose? I always thought it was for rare conditions that most doctors didn't know how to treat.
Thx

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Linda, Volunteer Mentor | @walkinggirl | 3 days ago
In reply to @sassyrdh329 "@doctorboo1 can anyone go to the Mayo Clinic if they choose? I always thought it was..." + (show)
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@doctorboo1 can anyone go to the Mayo Clinic if they choose? I always thought it was for rare conditions that most doctors didn't know how to treat.
Thx

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@sassyrdh329 Yes! Anyone can request an appointment. Here is a starting place: https://www.mayoclinic.org/appointments. In my case, I was a patient at Mayo for a septal myectomy. Here in the Capital District on NY, there are no COE hospitals for HCM, and I was at the point where I needed the surgery. My cardiologist, trained at a place that is now a COE in Boston, named a place in Boston and Mayo. I knew the Mayo Clinic's worldwide reputation for heart care, or any medical care for that matter, I immediately chose it. I am so, so glad I went there, the care given throughout my association with that institution was beyond superb.

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leenag | @leenag | 3 days ago
In reply to @baystater101 "@leenag I had a pacemaker installed a few days after my septal myectomy (at age 73)..." + (show)
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@leenag I had a pacemaker installed a few days after my septal myectomy (at age 73) in July 2025.

Here is an excerpt from my post of a few months ago:

"I turned out to be one of the five to ten percent of septal myectomy patients for whom a pacemaker would be required after surgery, even though they did not need a pacemaker before surgery.

Apparently everyone, after a septal myectomy, wakes up wired to an external pacemaker that sits on or near the hospital bed. At some point after the patient wakes up in the cardiac ICU, the pacemaker is turned down, and the team looks to see whether the heart resumes normal rhythms. If it does not, they turn the external pacemaker back on, and keep checking periodically for a couple of days. In my case, due to what’s called 'heart block,' it became apparent that my heart was not going to beat more than 40 beats per minute on its own, so four days after my septal myectomy a pacemaker was implanted in my upper left chest and wired to the heart."

My surgeon decided that since I needed the pacemaker, he would install a combination pacemaker/defibrillator, although Afib had not been a problem for me before the surgery. The implant is electronically monitored remotely.

I had a couple of incidents of Afib shortly after the surgery (as detected by the monitoring -- I did not feel the Afib, and the Afib was not severe enough to activate the defibrillator). The last Afib incident was in September, about 6 weeks after the surgery. I am on a blood thinner now, but if I continue to have no Afib for a year (through this September) the docs say I can probably discontinue the blood thinner.

I have now been back at the gym for several months (4 or 5 times a week), and back at as high a level (or higher) of aerobic activity as I was before I became symptomatic with HCM about two years ago.

I must admit that at first it was a mild downer to learn I would need an implant. Pre-surgery I had visions of being entirely "treatment free" after the surgical recovery period.

But I got over that quickly, and came to appreciate and focus on my good fortune at being a beneficiary of the medical advances of recent decades.

I gather from your post that your surgery is upcoming. Good luck with it! I have no regrets about mine.

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@baystater101
Thank you so much for reposting. It is very helpful. I had a consult at the Cleveland clinic and Myectomy was recommended with all my issues of rapid SOB on slight exertion, afib that is hard to control despite two ablations and 3 cardioversions. Am in sinus rhythm currently. Additionally I have a very enlarged Left Atrium ……it’s been remodeling for a while now. I feel I need to a surgical intervention vs Camzyos for any long term chance of some normalcy…..and some reversal of LA size. The decrease in size will help with Afib too. The cardiologist already warned me of a pacemaker as I already have a rt bundle branch block so heart block after myectomy is quite likely. It’s worrisome but I am coming to terms with it. Your positive experience is encouraging. I will begin the process of surgery soon. Did they determine your coronary artery disease status? I don’t have symptoms yet but have a strong family history and want everything fixed in one go if needed. 🙏

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Linda, Volunteer Mentor | @walkinggirl | 3 days ago
In reply to @gwenm "Hi. I'm 70 and have had symptoms of HCM since birth (a very long and winding..." + (show)
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Hi. I'm 70 and have had symptoms of HCM since birth (a very long and winding road). I was approached about septal myectomy at Mayo in 2009 and again in 2014. I declined as my condition was managable with meds at the time and lifestyle changes. I lived alone and was hesitant to undergo the rehabilitaton needed with open heart surgery. I started on Camzyos in 2022 within months of it being FDA approved and had dramatic positive impact within a few days. My NYHA classification dropped from III to II, I was much less short of breath, fewer palpitations, improved circulation and a hopeful attitude people in my life took notice. I felt renewed!! In the last few years I've had arrhythmia problems to manage while remaining on 2.5 mg/day of Camzyos and am glad I did not have surgery.

My opinion is that surgery is doable if the medication does not work; close monitoring will enable you to know that quickly. I also believe surgery is a preferred approach for younger people who do not want to be in a liftime of medication. The rigors of open heart surgery at this age are also a consideration. Best to ask around as to other's experience and wish you the best of good health.

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@gwenm I am so glad that medication for your HCM is working for you! There are mixed results. I have read here on Connect and my cardiologist read in the medical literature that it's a miracle drug; it does not help at all or that it works for a time and then does not work. We are all individuals and have unique outcomes. I would like to add that I had a septal myectomy 3 weeks before my 76th birthday in 2022 and there are other "old timers" like me who had a successful and positive experience. That said, I had always been a fit and active person who ate a healthy diet etc. and it is likely that figured into the decision to accept me as a patient at Mayo. I did not find the PT and OT starting 24 hours after surgery difficult ("you have a strong core and legs"), slow and deliberate movements were needed. A week later we were home. The next day I was cooking a bit, walking short distances many times a day outside and more. Yes, slowly, for short periods of time and more carefully during the recovery time while listening to my body. If you are advised to have surgery, please do not rule it out on account of age. Your insurance may cover home help for a time, mine did if I needed it as well as 2 weeks of meals.

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baystater101 | @baystater101 | 3 days ago
In reply to @leenag "@baystater101 Thank you so much for reposting. It is very helpful. I had a consult at..." + (show)
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@baystater101
Thank you so much for reposting. It is very helpful. I had a consult at the Cleveland clinic and Myectomy was recommended with all my issues of rapid SOB on slight exertion, afib that is hard to control despite two ablations and 3 cardioversions. Am in sinus rhythm currently. Additionally I have a very enlarged Left Atrium ……it’s been remodeling for a while now. I feel I need to a surgical intervention vs Camzyos for any long term chance of some normalcy…..and some reversal of LA size. The decrease in size will help with Afib too. The cardiologist already warned me of a pacemaker as I already have a rt bundle branch block so heart block after myectomy is quite likely. It’s worrisome but I am coming to terms with it. Your positive experience is encouraging. I will begin the process of surgery soon. Did they determine your coronary artery disease status? I don’t have symptoms yet but have a strong family history and want everything fixed in one go if needed. 🙏

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@leenag Yes, I had cardiac catheterization testing done a short while before my septal myectomy surgery. To the best of my (layman's) understanding, the purpose was to test for clogged arteries, and no problems were found.

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snewbrough | @snewbrough | 3 days ago

You have a lot of great support with this group, and it's definitely not an easy decision. I am 63 and have lived with minimal symptoms of my HCM for many years (using just a beta blocker). However, about 4-5 months ago, it got a lot worse. Couldn't climb stairs, had to sit down during minor activities, and was very tired. It was the HCM, my doctor and I discussed the options (septal ablasion or surgery); or Camzyos. I was scared by the medication due to all the cautions and side effects. After talking with my physician and husband, we went thr route of medication. I have now been on it for 3.5 months and had 3 echos in those last months. Finally the most recent one (May 2026) showed improvement and it seems that the medication is working. I read all the information I can get and know that there is a chance the medication could stop working, and I would be back to another decision or it could keep doing its thing. I guess the decision has to be what's best for you and your life. I can understand wanting to get back to your activities, that was something I sure did miss when I couldn't get anything done due to exhaustion. Best of luck in your decision, and in your health.

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Eddie | @emenich | 16 hours ago

I got my septal myectomy surgery date! July 7 at Duke. I’m very excited and hopeful for this new chapter in a long journey. Please keep me in your thoughts.

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dconner | @dconner | 16 hours ago

I’ve been on Camzyos for 4 weeks, and because of my symptoms, how I still feel exhaustion, , extreme fatigue, chest pain on left side of my chest, feeling bad most of the time, especially after doing something. Had my 1 month echo yesterday, and it did show some improvement such as:
• Left Ventricle: Normal size. Moderate septal thickening. Normal wall motion. Normal systolic function. EF by 2D
Simpson biplane is 70%. No LVOT obstruction at rest. LVOT pressure gradient increases with Valsalva. LVOT peak
gradient at rest is 5 mmHg. LVOT peak gradient during valsalva maneuver is 31 mmHg.
• Mitral Valve: No systolic anterior motion. Trace mitral valve regurgitation.
• Right Ventricle: Normal size. Normal
Even though this shows improvement, I still want to stop Camzyos therapy and have Septal Myectomy surgery. Waiting for my cardiologist to call me today to discuss results and surgery. What is the possibility that my cardiologist will ok proceeding with surgery after I’ve been off of Camzyos the recommended time. I’m just really not crazy about taking this medication for a long time because I don’t know how it’s going to react to my body a long time from now. It’s my body and I know how I feel!

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