HCM, Camzyos & Knee Replacement: What are the risks?

Posted by newtosohcm @newtosohcm, Oct 5, 2023

What are the risks of undergoing spinal anesthesia and other meds as well during and after surgery?

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Hi @newtosohcm,
Those are some good questions. I would want to know the exact same thing if I were having surgery!
Connect does not delve into dispensing medical advice, we share our stories and opinions and what worked or didn't work for us. This seems like a question for both your physicians, so if you have not yet, I would be sure to let your cardiologist know, and also the orthopedic surgeon. They both need to be on board long before you undergo surgery. The anesthesiologist is also a major player in this deal...so going forward, I would say you need to get all the main characters involved.
When is your surgery scheduled?

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@karukgirl

Hi @newtosohcm,
Those are some good questions. I would want to know the exact same thing if I were having surgery!
Connect does not delve into dispensing medical advice, we share our stories and opinions and what worked or didn't work for us. This seems like a question for both your physicians, so if you have not yet, I would be sure to let your cardiologist know, and also the orthopedic surgeon. They both need to be on board long before you undergo surgery. The anesthesiologist is also a major player in this deal...so going forward, I would say you need to get all the main characters involved.
When is your surgery scheduled?

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Thank you for your reply🏊‍♂️ We are in total agreement and I’m moving forward cautiously since this is such a new drug. I will self advocate to make sure the doctors are all on the same page. I only want to have surgery if a cardiologist who is familiar with HCM and Camzyos is on call if my heart goes south during surgery. Just wondered if anyone else had had to have surgery while on Camzyos and how it went. I understand though about the parameters of this site and respect everyone’s privacy. Thanks again.

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I would like info about the effects/interactions of Camzyos with anesthesia drugs. I’m going to have a total knee replacement asap. What are the risks or concerns? I realize it’s a question for the anesthesia team and my cardiologist to discuss but I don’t know how to make that happen. My cardiology team is swamped and I live 8 hours away where no one is familiar with Camzyos or HCM.

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<p>I’m seeking input from someone on the new drug for HCM who has had to go in for a total knee replacement.</p>

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Hello @newtosohcm, I moved you discussions and combined them into the "HCM, Camzyos & Knee Replacement: What are the risks?"
https://connect.mayoclinic.org/discussion/hcm-patient-on-5-mg-camzyos-since-81623-and-need-knee-replacement/

@newtosohcm, have you had a chance to discuss your knee replacement concerns with your cardiologist or surgeon?

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Yes but my cardiologist is primarily interested in how the Camzyos is working since it’s such a new drug. I hope to have more discussion with her in Feb on our next zoom appointment regarding the risks of anesthesia.

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@JustinMcClanahan

Hello @newtosohcm, I moved you discussions and combined them into the "HCM, Camzyos & Knee Replacement: What are the risks?"
https://connect.mayoclinic.org/discussion/hcm-patient-on-5-mg-camzyos-since-81623-and-need-knee-replacement/

@newtosohcm, have you had a chance to discuss your knee replacement concerns with your cardiologist or surgeon?

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I had a follow up visit in person in November with my UCSF cardiologist to assess my latest ECHO to evaluate how the Camzyos was working. She is primarily a researcher. She knows the drug Camzyos extensively and what its effects are on the heart. I told her I was needing a TKR and will try and get more info about going under anesthesia while on this heart drug (a myosin inhibitor) when I have a zoom appointment with her in February. Unfortunately the new CEO over her is telling her to not spend so much time with patients which is disturbing, Things were much much better communication wise before the N.P. left the team and was not replaced.

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I’m still seeking input from anyone familiar with Camzyos and going under anesthesia. My cardiologist has consulted with the drug manufacturer/Bristol Meyers Squibb but they lacked the data to make any recommendations or guidance to her to give me at this time. They (drug folks) are going to convene in March and hope to have recommendations sometime in March. I remain hopeful but with more questions than answers. Quite nerve wracking, really and I’m normally a calm person, having seen a lot as an RN for the past 42 years. My surgery date is May 23 unless I chicken out. Just living with a lot of knee pain. But swimming almost daily which is always painless and good for my heart.

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I am still searching for answers input or anybody on Camzyos who has had a total knee replacement to simply share info with. There’s gotta be SOMEBODY out there😊

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