What surgeries are available for obstructive HOCM?
My cardiologist said that for my HOCM, which has become obstructive, septal myectomy (I think that's the one where a chemical is used to thin your heart walls?) would not be for me, and that some sort of cutting or shaving of the heart walls would be what I would get. But she told me that the drug Camzyos would be the first step. I started Camzyos about a month and a half ago and symptoms are better, but stress makes them worse. And the constant monthly rules every single month to get the next month's supply of Camzyos are a pain in the neck, with the fear that at any moment, I might need heart surgery anyway... Has anyone had the "cutting or shaving" heart surgery to thin their heart walls for their HOCM? What was it like? What was recovery like and how long did it take? How long in hospital? Any other types of heart surgery for obstructive HOCM?
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Hi @jmr091805 and welcome. You can find all kinds of terrific real-life experience from folks here. Camzyos, ablation, septal myectomy - and a whole lot more for the treatment of OHCM. I encourage you to look up the following discussion started by one of our fantastic volunteer mentors @karukgirl . Good luck with whatever approach you take for dealing with your OHCM. For me Camzyos has been fantastic but it's not for everyone.
https://connect.mayoclinic.org/discussion/what-i-learned-from-my-open-heart-surgery-part-1/
Glad you found the site, im thinking since the cardiologist is recommending septal myectomy and not alcohol ablation you must be young and in pretty good shape.
I hope your talking with a hospital of excellence about your condition.
If you see some of my post on this site as well as others i believe you will truly find what your looking for.
Each person is different and has a unique path of recovery for their condition.
Im 57 active male recently diagnosed with HCM with severeLVOTO was put on camzyos to get me feeling better while awaiting septal myectomy in June
I feel so much better being on camzyos but like you mentioned my obstruction becomes a real issue when the heart is stressed even on camzyos.
The mayo cardiologist said that alcohol ablation is not right for me considering my active lifestyle, youth, and good health!
He said I'm perfect candidate for myectomy
As you consider myectomy take a look around and see that your choice of hospital is critical for this procedure!
As explained to me that alotnof facilities will tell yku they can do the procedure, that is not true! Do not listen to them there are only a few facilities that can do this procedure correctly!
I hope you get all the answers you need and have some peace with the decisions needed:)
I was told by Mayo doctors that the medication was not an option for all due to the length of time it takes to show results. At my age (67) it was not an option. Only option was a myectomy to remove parts of the wall that is enlarged and causing obstruction. They also removed on the first myectomy a 3rd papillary muscle that was also enlarged and causing obstruction.
Second myectomy required more removal in the apex of the left ventricle. Not very common to have a second myectomy.
I would highly recommend the mayo clinic for this type of surgeries. They are the experts in the field.
I am 86 years old and recently had the alcohol septal ablation with success, but you may be too young for that. Doctor Basar Sareyyupolu at Mayo Jacksonville, Florida does the surgery through the rib cage so that the breast bone does not have to be dealt with.
I am two weeks out from having a septal myectomy in Rochester. A year ago I tried the Camzyos route and even adjusting down on the dose, I had to stop after 3 months due to my 50% LVOT which took me outside the protocol. I tried again after 3 mos but the pain of scheduling echos and obtaining the drug in a timely fashion became too much of an obstacle and my function much worse. I called Mayo in Rochester (where they had my records from a second opinion in 2005). After a video consult and records review I was scheduled for the myectomy in a month. After review of all my tests, I was told they would do the apical myectomy at the same time if it was needed, but thankfully it wasn't. Having 2 experienced surgeons who specialize in myectomies, as well as a CV team to facilitate recovery made it so much more reassuring.
The post op recovery hasn't been a picnic, including the two day drive home, but I was given many tools and proactive teaching to make it easier. I was out of the hospital in one week and back home in another 5 days.
I am walking again without shortness of breath, dizziness and continue to feel better every day. I still have HCM but with the obstruction gone, what a difference. I hope to improve over the next weeks to even more strength.
I highly recommend getting a second opinion from Mayo Clinic. About 5 years ago, one of my local cardiologists actually told me to go there because "they have written many of the protocols for HOCM management", his words.
A childhood friend of mine is a retired cardiologist in the San Francisco area and recommended alcohol septal ablation for many of his patients in their 20's, 30's 40's etc. One was a triathlon participant who returned to such competitions. I am so very glad that at age 86 you seem to have done well! It's great for older patients because of the less body trauma during recovery. I was not a candidate for that because of the placement of my obstruction. The way it was explained to me was that a catheter going into a thigh vein to the heart delivered the alcohol to the heart. Less hospital time but longer recovery for the heart than a myectomy. The technique of your doctor shows us all that new things are welcome developments that benefit so many of us. Please let us know how your recovery is moving along and please explain the difference in how you feel now as compared to before the procedure.
In order to have TAVR, my hypertrophic cardiomyopathy had to be dealt with. Luckily, the doctor did a heart catheterization, and found an appropriate place to do the alcohol septal ablation. If he had not found a good place, I wouldn’t have been able to have it.
My symptoms had been shortness of breath and fatigue. After the alcohol ablation, I am breathing much better and the Mayo team is delaying TAVR to let my heart heal further. It is even possible that my aortic valve stenosis may not be as severe now. In July I go back in July for an echo. I believe the Mayo team really expected me to need a pacemaker which I did not need. I feel so much better.
My previous cardiologist told me I was too old for these procedures. In fact, in his report, what he said was, they couldn’t do TAVR without dealing with the HCM. I can’t believe how close I came to believing I was too old and not getting a second opinion.
My procedure was not done through my groin; It was done through my wrist. Incredible experience. The only complication was, I was diagnosed with flu a the afternoon after the procedure, which kept me in the hospital for three nights instead of 1 or 2. Except for the flu, I felt better as soon as I got home. I had a flu shot so I didn’t get very sick.