Oh my goodness @dbrima, my heart goes out to you. Thank you for sharing your story here on Connect. I suppose there is always a downside to trying new drugs...and this sounds like it started out with good results but now the bad outweighs the good. There certainly are no long term studies on a drug so new, and it sounds like your precious daughter is not a candidate any longer. I'm relieved to hear your daughter has a doctor experienced in HOCM. There truly aren't many, so that is a blessing.
I had a septal and papillary myectomy a little over two years ago at the Mayo in Rochester. Naturally, anyone would have fear of undergoing a major, major surgery. I can tell you that the care I received at Mayo was world class and the doctors, nurses, lab techs, dietary aids, housekeeping, etc are the reason I did so well. You mention you live in a major city, do you know if the hospital you are going to is a Center of Excellence (COE)? That is super important as the septal myectomy should only be performed by the top surgeons at a COE. There are only a few places in America that are considered COE for HOCM surgery, naturally, Mayo is one.
I am so sad for you, I can tell this is terribly hard on you too. Watching your child suffer so much. You came to the right place for information. Please feel free to reach out anytime with any questions. When do you believe they plan to schedule surgery? Do you know if they need to let her heart get stronger before going through it? What does your daughter think about all this?