Has anyone had minimally invasive Septal Myectomy?

I have just had a mini mitral replacement in London with a small shaving of the septum. It was minimally invasive and under the right arm and behind right rub. It’s 12 weeks now and am still recovering and recouperating. It’s no picnic believe me but you will come out the other side emotionally bruised and battered. I have gone into A F but should subside within 6 months. I was being treated for HOCM for around 15 years and apparently mitral was the real problem. Camzyos was not for me sadly and I was pretty much symptom free but 29 years down the line who knows. Some days I just wish I hadn’t done this but approaching week 13 feel it should have been done. Has a rough time in hospital with pneumonia, delirium (with anaesthetic) and Covid but that’s life. Wishing you all well in your journey. The bypass machine you won’t even know about and I am a youngish 74. Hope this helps.

Hi Katie,
To answer your question, I was on CAMZYOS for almost a year. I felt like I was wearing a corset around me and had no so great side effects. It took months to get my blood pressure normal and overall it wasn't for me! So here I am researching doctors to do a minimally invasive operation to fix my HOCM. I wanted a doctor who has done this with their eye closed! I am still young (62) and having my whole chest ripped open was not an option for me. I have an appointment via zoom with a doctor is Gainsville, Ga., Dr. T. Sloane Guy to discuss this operation and if I would be the right candidate for it. There is another doctor Dr. Wierup, from the Cleveland Clinic who also does this type surgery. I have not done research on him due to I live close to Ga. Any doctors that say this is not avail. I don't know what to say. 🙂 Hope this helps. What have you researched???

Hi @mspop111,
It sounds like you are one of many for whom Camzyos just isn't going to work. It's definitely worth trying now that it is available, but again...it just isn't for everyone.
That being the case, you are left with fewer options for treating symptomatic HOCM.
May I offer my advice? Please do not let distance be one of your factors in seeking out a Center of Excellence, nor do not rule out listening to the experts at the Center of Excellence!
I travelled across the country to land in Minnesota to have open heart surgery. If I was going to go through this...by golly I was going to the best in the world!
Cleveland Clinic is also a COE, and I know medicine makes advances all the time, so if a COE is making progress on minimally invasive septal myectomy that is great. Prepare to learn you may not be a candidate for it, and accept that information and process accordingly.
Only you can make these decisions, but doing all the homework, research and fact finding, just as you have, will put you in a better place when you do finally make your decision.
Open heart surgery would cause any normal person to recoil with fear! I remember sitting in a chair, across from the surgeon, hearing him tell me I needed a septal myectomy. I think all the blood drained from my head, the room felt like it was shrinking, and my hands starting sweating. I told him I heard about minimally invasive surgery...could he do that. The answer was no. And his reasons resonated within me and I agreed. I could not believe I had actually agreed to have open heart surgery. I was stunned. Shocked. I felt like I was dreaming.
So I get the fear. But I knew I could not live my normally super physically lifestyle with HOCM any longer. In fact, I was not sure how long I would even live! So here I am, four years later, ever so grateful for open heart surgery. Yes, it was rough. I was 62 years old at the time. But it was not as heinous or terrible as I had conjured up in my own mind!
I had to decide to leave my home, travel a great distance, go through a tough surgery and fly back home to get to my dad, who was on hospice. He died three days later. So I know it can be difficult. But you are stronger than you know already!!
Dr. Steve Ommen at the Mayo Clinic is considered the world's leading expert in HOCM. He writes the protocol for treatment of HCM/HOCM that other doctors practice.
I mention this only to let you know that your life is more important than distance or trying to find a surgeon to do a surgery that may or may not be right for you.
I'm not trying to tell you to give up looking for someone to do a surgery you would rather have, I am trying to tell you to find the best and listen to what they say with an open mind.
I did a lot of research before I had my surgery, and I remember well thinking much as you are right now. I never thought I would fly across the country a go the the Mayo Clinic. Again, the point is do not let distance be your guide...let the experts guide you to your best decision.
Did I make any sense here and sound helpful?

I am sorry if I misunderstood you but you are saying that one doctor told you that robotic myectomy minimally invasive surgery is not available for HOCM? Dr. Wierup of the cleveland clinic also performs this type of surgery. I am not sure how long ago your surgery was, but this is available NOW and those who are candidates for it should do their homework and seek out those doctors with success. You agree?

I am sorry if I misunderstood you but you are saying that one doctor told you that robotic myectomy minimally invasive surgery is not available for HOCM? Dr. Wierup of the cleveland clinic also performs this type of surgery. I am not sure how long ago your surgery was, but this is available NOW and those who are candidates for it should do their homework and seek out those doctors with success. You agree?

Hi @mspope111,
My surgery was four years ago, and minimally invasive septal myectomy was available, I was told by my surgeon that it would not work for me due to the location of my obstruction, and all I was sharing is that each case is different and to be prepared to listen to the experts as they go over your options.
I also mentioned that advances in medicine happen each day, for which I am so grateful. In your case you may be a candidate for the minimally invasive approach. I would have chosen that if I could!
I wanted you to be able to look for the best of the best for you, and not worry about the surgical approach or location of the hospital.
This surgery is so precise, so delicate that it requires a skilled expert who has done hundreds of them. A COE has achieved that status based on many things including technical skill, research and excellent outcomes and the highest quality of healthcare.
Not to say that other facilities cannot perform this procedure...
I hope you keep us posted on your journey! It is a lot to process and you are doing your homework and being your own best advocate.

Hi @mspope111,
My surgery was four years ago, and minimally invasive septal myectomy was available, I was told by my surgeon that it would not work for me due to the location of my obstruction, and all I was sharing is that each case is different and to be prepared to listen to the experts as they go over your options.
I also mentioned that advances in medicine happen each day, for which I am so grateful. In your case you may be a candidate for the minimally invasive approach. I would have chosen that if I could!
I wanted you to be able to look for the best of the best for you, and not worry about the surgical approach or location of the hospital.
This surgery is so precise, so delicate that it requires a skilled expert who has done hundreds of them. A COE has achieved that status based on many things including technical skill, research and excellent outcomes and the highest quality of healthcare.
Not to say that other facilities cannot perform this procedure...
I hope you keep us posted on your journey! It is a lot to process and you are doing your homework and being your own best advocate.

Thank you for your caring words and support. I was planning on surgery within 2 months and currently having tests at Duke Health in NC which is a COE. I am considering Mayo in Minnesota as one of the COE where highest number performed there. They do minimally invasive robotic (through the ribs) heart surgery but need to actually reach out if SM procedure is done. I understand though that a SM is very intensive surgery, unique to everyone’s own heart anatomy.

I would love to follow your path, I am in Dallas, and my care team (not a COE) told me they do robotic myomectomy through the ribs, but other sources I find keep indicating that it has not been studied or published enough. I am meeting with that surgeon at the end of January and am gathering questions to ask. After all of my research thus far, he will have to really convince me that it is the way to go because I am leaning against it. Apparently, there are a lot of lifelong consequences if they don't get it right, i.e., thin the septal wall too much could mean a permanent pacemaker, etc. Good Luck!