Camzyos vs. Surgery

Hi, I’m 60+ and was diagnosed in July.

Based on my research/experience: gradient matters more than thickness, but real-world effects matter more than any numbers. One person could be asymptomatic with “worse” numbers and/or thickness than a person with “better” numbers and/or thickness but who gets out of breath walking half a block on flat ground.

My numbers were similar to yours (>150 post-eating and exercise), w/ max septum of 16. Treated at a COE.

For what it’s worth, I decided to have the myectomy. My thinking: I had a mechanical problem and the surgery offered a lifelong mechanical solution. I had access to a COE and a very experienced surgeon. If I had been significantly younger, I would have more seriously considered trying medication (because I would have had more years to try and still be able to have the surgery while young and strong, and still enjoy a higher quality of life thereafter). If I had been significantly older, I would have tried medication to avoid the trauma of surgery. And if I didn’t have access to an experienced surgeon at a COE I would have tried medication. It seemed to me that I was in the sweet spot for going straight to surgery. (Of course, one can rationalize these decisions lots of ways.)

I had the surgery in September. I have not experienced a moment of inappropriate breathlessness since and haven’t felt faint once. I’m back to my small group fitness classes as of January and am recovering strength lost from a 6-month hiatus.

I will say that there were times in the recovery period (first 2 months) when I questioned my decision, and wished I hadn’t gone down this road, but with each passing day since, I’m happy I did.

With Camzyos 5 mg my septum size went down from almost 1 inch (yes 2.45 cm) to 1.6 cm in only 8 weeks and also I was very strict with my diet "losing 15 pounds in only 8 weeks". My angina is gone. Now I feel a lot better with no chest pain. I do not mind taking Camzyos for the rest of my life (I am still taking 5mg of it) as long as I do NOT need open heart surgery. I wish you the best.

I have been on Camzyos for two and a half years and it absolutely has changed my life. My heart responded so well to the drug that I am able to do most physical activities I want. I was diagnosed at 59 with HCOM. I do believe each person is so unique with their heart situation, gathering as much information is key to making your decision. It is definitely not "one size fits all." This blog is a wealth of information as well as researching on your own. For instance, basic things have really helped me feel better such as eating very small meals, hydrating with not only water, but once a day drinking a combination of one squeezed orange, half a lemon, one tsp. honey and three flakes of sea salt. as well as walking every single day and doing gentle exercising. I struggle with sleeping, but when I sleep well, my heart feels so much better. I mention these things because for me, there are lifestyle choices which help your heart feel better and allow the meds to work for you. I am trying to work on those, too. Good luck to you.

My story is very similar to yours.

45yo 0-10 resting gradient 170+ with exercise. 14mm septal thickness. I’m mildly overweight by 10 lbs which was gained after starting verapamil.

My provider put a hold on Camzyos start because she ran my case by surgeons. With the mild hypertrophy, she wants to rule out my obstruction being primarily valve related. I have a TEE scheduled in a few weeks. If that shows up okay for the valve, I’ll be starting Camzyos.

However we’ve been exploring both paths of surgery vs Camzyos. I’m young, fairly fit (exercise 5x a week), and a good surgical candidate I’ve been told.

With my age and having that on my side, I’m thinking of giving the Camzyos a try while I prepare myself for the surgical route or other therapies that could evolve in the next few years. If the Camzyos isn’t successful for me, I can feel comfort that I gave it a go before surgery. The other side of my brain though says just get the surgery and move on.

My surgical concern is the impact on my family (young kids) and impact on my business (self-employees). No family local to us and it will take planning to get things in a place that feels coordinated for success. Additionally, if I want surgery at a COE, I need to change health insurance (currently Kaiser Permanente), and with the state of healthcare and my very attentive team at Kaiser, it adds another big concern.

You’re right that sometimes just voicing this stuff helps, and hearing from others with similar concerns/issues. Wishing you well on your health and whatever path you take!

@mmicahk
I avoided the surgery by having my Cardiologist prescribe me Camzyos 5 mg. My septum went from 2.5 cm to 1.6 cm in only 8 weeks. I have to keep exercising and walking I know for I am 65 years old. I do not have any angina symptons any more.
If I were you I would try Camzyos and see if it works on you for it worked not only in me but in a lot of patients. Good luck.

@manuelpo thanks for your comment and I’m glad that Camzyos is helping you!

It seems to help most in the comments I’ve read over time.

My anatomy isn’t as significant as yours, with only 1.4cm thickness, which is why they are checking my mitral valve, which may be more of mechanical issue and Camzyos wouldn’t solve that. As long as my TEE shows no major valve issues, I will be trying Camzyos.

The challenge I am factoring is long term considerations at my age of 45:

1) We don’t yet have long term data on efficacy over decades of life. I may need the surgical intervention anyway at some point and as told to me by my provider, surgery will help with recovery speed and less possible complications due to my age and current fitness level (works in my favor).

2) Unknown long term costs. Current insurance is $250/mo and for 40+ years (if it works that long) is quite a healthcare expense, on top of growing insurance costs. I’m realistic that as our bodies age, there will be other added medical expenses.

I currently exercise 4-5x a week but have noticed exercise capacity reduced at a slow pace over the last year. It keeps catching me off guard. The angina, fatigue, and reduced capacity will hopefully resolve with the Camzyos.