Has anyone had a septic myectomy and then had to go back on camzyos

I thought that after a septal myectomy that the enlargement did not regrow. That was it! That’s what I was told.,

Thank you for writing that! My cardiologist said that he did not know if it would grow back. Some people in this blog are having continued HCM problems after a septal myectomy. I know that we are all different.

Yes we are indeed all different! Keep well. 🙏🏼

@walkinggirl
What year did you have a septal myectomy? Was it 2022?
Also your age also, if you don't mind.

Hi Deanna529, yes 2022, it's coming up 2 years in July. I was 75 at the time, almost 76. I had led a very active life with no problems: first a jogger, then a walker, bike, paddle, traveling etc. The incident in Feb 2022 was the turning point and the rest is history. My cardiologist has said I had "an unusual kind" of HCM because I had no pain or difficulty breathing, even during stress tests, until 2/2022 even with the progressing obstruction over the years. The day before we began our drive to Rochester MN I did my usual routine at the gym (I focus on strength, balance and flexibility), I do not consider that fun. Genetic testing of 123 known HCM genes in 2022 found no mutations. I feel so bad for everyone who has not found the treatment to alleviate their symptoms because quality of life is so important. I have been back doing everything I have always done.

@walkinggirl
Thank you for the information.
May I ask, What was your turning point? Your incident on Feb. 22? It sounds like you really did not have any symptoms until February of '22. What happened?
I used to be a runner and jogger also. But the symptoms of HOCM hit me at age 67. I had my open heart surgery when I was 68. I am 74 now. I am hoping for some quality of life.
I am so happy for you!
xoxoxox

I wrote an essay (16 pages), about my experience. Here is the 2/22 part: When Something Needed to Be Done:
During the second week of February, 2022, I woke up during the night feeling ill - a food poisoning or stomach virus type of feeling. I was on my way to the bathroom when I very suddenly became dizzy and unsteady and I quickly passed out, one of the signs of a heart attack in women. Jim (husband) woke up and called 911. I was taken to Saratoga Hospital where I had a catheterization and it was determined that I was not having a heart attack. In fact, my arteries were described as "pretty clean." I did break two ribs when falling, verified months later. It was extremely painful, worse than childbirth. The hospital staff poo pooed the idea that something else was amiss and said there was nothing on an x-ray, but did give me Tylenol. It took several weeks before they were fully healed, I had to sleep in a recliner because it was extremely painful to get out of a bed.
After discharge I had a consultation with Dr L (cardiologist), it was clear to him that the continued thickening of the ventricle wall, causing disruption in blood flow, was the reason for this incident. I had obstructive HCM. He said in no uncertain terms that this was life-threatening and it was my decision to take action. “Your family will miss you.” Surgery is available to alleviate this condition and I - much to his relief - opted to pursue this route even though I was petrified. Only a few places perform this surgery, called a Septal Myectomy and the two places he recommended were the Mayo Clinic in Rochester MN and a hospital in Boston MA. Even though both places were highly reputable, I quickly chose the Mayo Clinic based on its reputation in treating heart ailments and its world-wide reputation in general. As I researched further, I learned that the Mayo Clinic has done thousands of these surgeries since 1959.

@walkinggirl
Thank you so much for sharing. I think I probably should have gone to the Mayo Clinic too. 🙂
I was recommended to either NYU or UPENN by another cardiologist that my daughter went to school with. I chose UPENN because of the proximity to where I lived in New Jersey. The cardiologist there recommended a surgeon in the same hospital. They said that he had a lot of experience but who really knows? I was so sick that I took a chance thinking that UPENN was on the cutting edge of this condition, Back in 2017 you hardly heard of HCOM. I hear about the condition much more in recent years. It was a crapshoot. It is what it is. I guess my research was not that great. I guess we all can learn a lesson here.
I really appreciate you sharing and am truly happy about your excellent recovery.
Be well.

I am 34 and had the septal myectomy 1 year ago. I started to feel sick about 3 months ago. My thickness is 1.5. My gradient is back up to 50. I get the verdict tomorrow about what can be done for me.🙏

My thickness is 1.6 mm and the surgeon said a few weeks ago way too small to operate it’s your mitral valve we need to fix. Now more confused than ever.