Post septal myectomy

Posted by alyssa6203 @alyssa6203, Dec 1 6:06pm

Hi everyone my name is Alyssa and I am 26 years old. I had a septal myectomy done when I was 24 years old and I fully believe the surgery saved my life. I was in a wheel chair for months before my surgery because I was so symptomatic, I could barely function. Now that I’m two years after my surgery I am having a hard time coping with my new lifestyle and the restrictions I have. I am currently on propranolol and verapamil to manage my HCM symptoms.

Before my HCM worsened I used to be very active. Hiking frequently and going to the gym to do weight training. I was benching 70 lbs and squating 150 lbs. I felt so great and I was very fit. Now after my surgery I am no longer able to weight lift, I have limitations to hiking. I always make sure wherever I travel there is a hospital near by in case something happens. I am a very independent minded person and never had a fear to be alone or do things maybe others wouldn’t. Now I am terrified to be alone because of everything I have been through. Now I’m not as independent, I have to depend on people because I might be more symptomatic on day than another. I feel trapped inside my body. I feel that I have lost myself and I don’t know how to get out of it. Has anyone felt like this? What has helped you cope?

Interested in more discussions like this? Go to the Hypertrophic Cardiomyopathy (HCM) Support Group.

nanakpm | @nanakpm | Dec 2 7:29am

A good cardiac rehab program should also offer psychological support. It’s very common to feel anxious or depressed post cardiac surgery, or dealing with a heart condition. I’m sorry you are having such a hard time. A psychologist would be the first person I would seek help from. Hope you find good help and feel better. ♥️

Debra, Volunteer Mentor | @karukgirl | Dec 2 10:16am

Hi @alyssa6203,
Welcome to Mayo Clinic Connect. Your HOCM sounds positively awful before surgery! It must have truly been a terrible thing to be as active as you were and end up needing a wheelchair! That would take a lot of emotional adjustment. It also took a lot of courage to have the septal myectomy. It's not an easy decision to make, and in your case it sounds like a life or death choice. You chose life! And now you have lingering symptoms causing emotional needs that are troublesome.
May I ask if your cardiologist is aware of all this? It seems to me the septal myectomy should have relieved the HOCM symptoms to a large degree, and you mention you are taking two meds to control symptoms. You also mention you need people around because your symptoms can be worse one day and maybe not so much another day. To me, and I am NOT a doctor (!), but I have had a septal and papillary myectomy, it took some time to recover from the surgery, but once I did I felt terrific. I know I will never be the same, but compared to where I was before the surgery it was like a miracle. I still have symptoms too, but have learned to adjust my activities to them.
I was a big-time hiker/walker and physically very fit too. I was in the best shape of my life and then HOCM slowly took most everything away...so I understand your frustration!
If this were me, I would seek out a second opinion. Certainly our thoughts can cause us to go down roads of despair or fear, but our thoughts can also lead us to a place of calm and peace as well. It concerns me that you are two years out and still so symptomatic. That is why I suggest a second opinion with a COE (Center of Excellence) doctor. Is it possible that perhaps your HCM is not completely addressed?
Was your surgeon from a COE?
Are your restrictions due to lingering complications from your debilitating HOCM?
I'm asking a lot of questions because I don't quite understand your situation, and I feel like you need a second opinion. You are so young, and thanks to the septal myectomy you have a life to live...but it sounds like you are afraid to live it due to fear of symptoms and a whole new set of restrictions.
Do you have anyone you can share this with? Your new Connect family is here to help virtually, and I hope you will come back and let me know how you are doing and what you think about a second opinion.
How often do you see your cardiologist? When was your last echo? What did it show?

walkinggirl | @walkinggirl | Dec 2 11:33am

I agree with Debra that a second opinion is a good idea. I also agree with nanakpm that cardio rehab is worth trying out. I was quite fortunate that my life quickly (less than 6 months), returned to pre-symptomatic days except for climbing many sets of steps and long steep hills. I take 50mg of Metoprolol daily and I have a pacemaker/defibrillator installed after a dizziness and syncope complication. Did you have your septal myectomy at a Center of Excellence (COE)?

manuelpo | @manuelpo | Dec 2 3:39pm

Please find a Cardiologist specialized in HOCM (Hypertrophic Obstructive Cardiomiopathy) that is "Camzyos certified" and talk to the doctor if Camzyos is a good option or not.
I never had the surgery but Camzyos allows me to hike even to slightly go jogging. So I feel a little more motivated about myself (I am almost 65 years old). If Camzyos work for you, will be great for I saw here too many people becoming moderately active with their lifestyle on that medicine.

Best luck to you.