How to decide whether to take Camzyos or have surgery?

@joyrcc Thank you Joyce!
While good services are available at UT Southwestern, I have a soft spot for Mayo's plus their exceptional record for treating this . Maybe being from the Midwest is a factor too.
My decision is becoming clearer each day I hear more from folks who have been treated and reading the research. Thank you!

@doctorboo1 Where is UTSW? I am not familiar with those initials. Where is your Presbyterian Hospital? I am admiring all of the research you have done in order to work with your medical team to arrive at a plan and your knowledge helps to generate good questions. From what I have read, the surgery done at an excellent place, a COE such as Mayo and others, generally does result in a permanent fix. I went to Mayo, nevertheless, that concern is there in my mind, too. I think "they" just don't know. As you probably know from your reading, HCM is inherited, some of your long-lived family members may have it but are lucky, they just may be asymptomatic. Do get genetic testing, if the gene is found (mine is among the undiscovered), your generation and younger can be screened for it. I am so glad you are dealing with this and looking forward to a very long and productive life.

At 73, I was given the option of drug treatment or surgery for my newly diagnosed HOCM. My doctor told me to go with my gut and I had the surgery. For me, the decision was impacted by the thought that waiting for the drug itself and for the drugs to work could take awhile. Something could change in the meantime, as, as far as my health goes. I also don’t have a history of doing well on any type of medications. As it turned out, I had super high pressure within my heart and surgery turned out to be the best decision, in every way. If I were you, I would discuss your questions about surgery with your HCM cardiologist. Although I am very active, I’m probably not at the fitness level that you are, due to years of an imperceptibly slow decline from the HOCM and after the surgery it does takes a while to get your stamina back. My thought is it’s 50/50 but reasonable to pursue.

Thank you so much for your post!
I wasn't as active as you are but enjoyed walking and traveling.
The lack of energy/fatigue that comes with our diagnosis is most frustrating.
It is good to know that there is a surgical alternative if Camzyos ever fails me counteract my fatigue.

@sassyrdh329. Thank you for sharing your experience. I have been out of the hospital for a month now and am angry that everything is taking so long. My cardiologist was only interested in the drugs and I had to push for a surgical consult. I strongly feel I'm getting worse and feel this thing has become a nightmare. Delays , mistakes, can't find records, approval after approval, signature after signature..... Someone even scheduled me for knee surgery on My Chart and now I'm getting repeated messages to prepare for it or watch videos.
I feel like getting on a plane and flying to Rochester, and just walk in the door.

Has anybody needed a pacemaker after a septal Myectony. I am also contending with Afib…..and was told I will likely need a pacemaker after the myectomy.

@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.

@doctorboo1 I am so sorry that you are dealing with a difficult situation regarding your treatment. Do you receive care at a COE (Center of Excellence) for HCM? I believe you can self-refer (request an appointment) at Mayo - here is where you can do that: https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/request-appointment/ptc-20122124 Be sure to select Rochester. When it was time for me to have a septal myectomy, my cardiologist here in Upstate NY referred me, sent all of my test results and whatever else they needed. I was accepted as a patient within a couple of weeks. It is definitely worth every ounce of effort to advocate for yourself; you deserve the very best care possible. Is there a different cardiologist near you that would work with you to get this done? In the meantime, you can decide to go to that website link and start the process on your own. Wishing you success in accomplishing this!

@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.

@karukgirl I am 72. I don't have severe ohcm but I noticed at 48 yo the shortness of breath ON exertion and how I couldn't do workouts or hikes (steep spott) anymore. I attributed it to getting older. As years went on, I could do things like help clean/paint/remodel rentals. And carry 5 gal buckets of paint. Finally by 67, I finally started really digging into what was wrong. My PCP was no use and didn't ever do PFT for breathing or recommend a cardiologist. I dodged some bullets on the journey and ended up at a COE in Kansas City MO. I am on Myqorzo now, since March. I never got dizzy, chest pain, passing out, etc, so I would say it is not severe. It was ALWAYS the exertion part that got me. My septal thickness is 16mm. I am assuming I just don't meet the criteria for open heart surgery, or even an alcohol ablation (not my first choice imo). The dr did say that on myqorzo, there should be no additional thickening of the heart muscle and that it can improve/remodels the heart muscle. I also read, when you stop myqorzo, within 24 hours the effect reverses. Weird. At the cost of myqorzo at 108,000 a year vs open heart surgery, I don't really see a difference! The first cardiologist bunch I saw couldn't even diagnose the OHCM even after I asked the nurse about additional testing for more info. (since my problem started at age 42, I wanted to get to the root of it all) She said if the dr thought I needed them, he would have ordered them! Four of the geniuses discussed my results and flipped a coin between mitral valve replacement or a pacemaker. I got the pacemaker. They said chronotropic incompetence. Long story on that. Do patients not get a say on how OHCM is treated? I am tolerating myqorzo at 5mg ok so far but dr wants to increase it already. We changed metapropol from 100mg down to 50 mg bc of fatigue side effect. I said to just change 1 thing at a time. I know St. Lukes is an excellent med center and excellent reputation. I used to be able to power up steep little trails in my day! I tend to ramble. I am 73 in August and relatively healthy.