Has anyone had minimally invasive Septal Myectomy?

Hello @debra1954, and welcome to Mayo Connect!
I had open heart surgery, septal myectomy and papillary myectomy at the Mayo Clinic. I also asked and was told this cannot be done by minimal invasively by my surgeon.
He told me the septal myectomy is too intensive and specific to be done thru the minimally invasive technique. I believed him.
Fellow member @walkinggirl also had open heart surgery at the Mayo Clinic, and I am not sure if she asked about doing a septal myectomy using this method or not?
Honestly? None of us wanted to have open heart surgery!
I totally agree with you, the mere thought of open heart surgery is enough to freak anyone out! It takes a lot of bravery and courage to accept you need this surgery. I have my life back and I am so very grateful!
Anyone who claims that they can do a septal myectomy through this method needs to prove their statistics are reliable in my opinion, and 100% be performed at a COE (Center of Excellence).
Do you know if your proposed surgeon is proven in this surgery? Are you affiliated with a COE?

Hello debra1954,
As our mentor Debra noted, I did have the surgery mentioned. Daunting is an UNDERSTATEMENT as I faced the inevitable surgery at age 75. I have never looked back because, as Debra expressed "I have my life back and I am so very grateful!" My cardiologist made it absolutely clear that "Your family will miss you," so, I assume, 2+ years later, my life would be quite different....
No, I never heard of this minimally invasive septal myectomy. I looked it up last night and found "There have been recent studies about minimally invasive approaches. These approaches use a smaller incision. Even though full open heart surgery remains the gold standard, studies from 2017 and 2018 suggest minimally invasive approaches may be just as successful." Two sites found using Google: https://www.healthline.com/health/heart/septal-myectomy#fa-qs and https://pmc.ncbi.nlm.nih.gov/articles/PMC5774662/
I wonder where the procedure takes place (Georgia?), because I fail to find its use for a septal myectomy at our major COE medical centers, yet, it may privately be under study at these places. Please keep us informed about your decision for surgery and how you are faring through this journey.

A septal myectomy is open heart surgery. Until Camzyos was available it was the best treatment for HOCM with severe symptoms. The best success rates are at Centres that do a lot of them, like Mayo, Cleveland and Toronto General Hospital.
I hope you consider Camzyos instead. If it doesn’t work you can look at having surgery instead. But give Camzyos a chance. That’s my experience and thankfully it works for me. I’m 75.

I need a septal myectomy. I am terrified but so hopeful. I am 62. I dream of running and playing w a dog. Not running like a marathon. This disease most likely took my brother and is working on another brother. I keep going over the pros and cons. I a m usually tough but am pretty depressed. The bypass machine scares me.

Welcome to Mayo Connect @acarla.
How I wish I could sit across from you and hold your hand and tell you it's okay. It's okay to be afraid of having open heart surgery. I can't think of any person on the planet that would want it!!
To make that decision, which is SO difficult, takes a lot of courage and being able to accept that you must need it if you are being lead this way can also be difficult.
I don't blame you for being terrified! I was 62 when I had mine and had so much fear. I faced the fear with the help of prayer and leaning on God.
I also knew I did not want to live the way I was. I had no life anymore. All the things I loved to do were taken away by this disease and I wanted my life back. Once I felt the peace of making this difficult decision, I had to learn to trust the process.
I do not know where you are planning to have your septal myectomy, but I certainly hope it is in a COE/Center of Excellence. There are only a few hospitals in the US that are considered COEs and it is very important your surgeon has performed many, many of these.
I promise you will remember nothing of the surgery. These competent doctors, nurses, anesthesiologists are on top of their game when it comes to open heart surgery. It's the septal myectomy that needs the precision of a skilled surgeon. The bypass machine is just part of the package.
I was pretty depressed too. Mostly because my life was so changed and I could no longer do what I loved. That is what motivated me to move forward and I have never looked back with any regret! It was the best decision I have ever made.
You are not abnormal to be afraid...you would be abnormal if you weren't!
Do you have a date for surgery? Where is your surgery? If you have any questions you can think of about it, I would love to share my story and my packing list with you!

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.

That was my aim. I live in SC and having a very hard time finding Cardiologist who is familiar, positive and licensed to prescribe this medication.
Also the cost is very high!
Is it covered through my Medicare advantage plan, what if plan drops you, distance to travel for monthly echos.

But haven’t had that discussion with a supportive cardiologist yet. Disappointing.

Keep trying to find a cardiologist! I had to convince my doctor to try it. Call Bristol Myers Squibb to see if they can help you find a doctor and options for coverage. There are many ways to get it co reed as reported in this chat group. Everyone is different.

Thank you. My father worked his whole life for E.R Squibb
(before Bristol Meyers merge) in New Brunswick, NJ.

I find it fascinating how this medication works. I understand there are many variables for its effectiveness and long-term results. Thank you for your encouragement to keep pursuing this treatment.