How to decide whether to take Camzyos or have surgery?

@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

@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.

@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. 🙏

@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.

@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.

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.

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.

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!

@emenich Hooray!!!!! It's a big, life-changing decision whether to go ahead with surgery vs. trying one of the new drugs. You have weighed all the pros and cons and made your decision. In preparation for the big day and the recovery, may I make some suggestions? With your doctor's OK, try to strengthen your leg muscles and your general core, a big plus in the PT and OT "they" insist you do, especially in rising from a chair using just your leg muscles. Think about where to sleep when you get home - I was most comfortable in a recliner; others do the pillow pile-up on their beds. If possible, be prepared to use either. At Mayo, they insisted I have a walker since we had a 2-day trip home to Upstate NY, we got to tour many rest areas along the way. See if you can borrow (no need to purchase) a walker just in case. Your home support team (family?) is probably preparing for their role, too. I hope that you will share your unique and very interesting experience with all of us in the future and encourage you to post updates along your journey.