What is the recovery like following septal myectomy?

Posted by quinn @quinn, Mar 17, 2016

What is the recovery like following septal myectomy?

@shatro

Hello, Everyone!

My name is Steve. I am 52 years old. I was diagnosed with HCM in my twenties. I was asymptomatic until I was 39 when I experienced an episode of Takotsubo Cardiomyopathy in the early course of my divorce from my first wife. I was prescribed a small dose beta-blockers and enjoyed the relief I felt from them. My semi-annual tests were routinely the same for over a decade, so much so that I was certain the disease had stopped progressing. I could and did walk long distances, hike, swim and bicycle as long as the inclines were not too great.

2 years ago my numbers bumped up – the measured LVO gradient increased by 20mm each year, and I've experienced increasing symptoms of s.o.b. and angina in spite of increasing medication 3 fold. I have two separate cardiologists with two separate opinions. One of them referred me to Mayo Clinic and my case was accepted by Dr. Nishimura.

Two weeks ago, I traveled to Mayo Clinic in Rochester for 3 day evaluation. My diagnosis of HOCM was confirmed and I am an "excellent candidate for septal myectomy". I found the care at Mayo Clinic, every step of the way, to be exceptional. I have had the privilege of also being served well in California at Stanford Medical Clinic and Mayo Clinic is a full class beyond. The tests were comprehensive and only applied as necessary. The attention to detail was consistent and pervasive. Empathy and positive attitudes were the norm.

I am scheduled for septal myectomy at Mayo Clinic with Dr. Crestanello on August 14th. I have compiled a list of suggestions to improve outcome. This forum has been very helpful and I want to thank those who have shared their stories.

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Hi @shatro,

I hope the surgery went well; are you able to share a few details about the septal myectomy? I look forward to hearing from you.

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I had an Extended Septal Myectomy and excision of Papillary muscle. Was SUPPOSE to start Rehab within 2 weeks but could not get in until 7 weeks. Now I'm finding the Rehab Center can't get a clear answer on if Medicare will cover it. Has anyone had this and have any issues with Medicare? I did leave a message to see my heart dr can get anything going but I don't think I'll hold my breath.

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@cynaburst

I flew home to Los Angeles about 8 days after my surgery. I was discharged from the hospital after only 4 days but I elected to stay in a hotel in Rochester for a few days before I flew home just to be sure all was stable.

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That is helpful', since I too am from CA.. Should I have someone stay with me after surgery to go back to CA.? (So Cal.)

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Jumping on here….. my surgery is December 5th. We live in the country and wanted to know what I should have in the house for rehabilitation.

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I had my surgery October 1st. I purchased a recliner which really helped to sleep in. I also had a lot of clean washcloths for my shower including a shower chair. Other than that it takes time. I am still recovering.

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@sheim

I had an Extended Septal Myectomy and excision of Papillary muscle. Was SUPPOSE to start Rehab within 2 weeks but could not get in until 7 weeks. Now I'm finding the Rehab Center can't get a clear answer on if Medicare will cover it. Has anyone had this and have any issues with Medicare? I did leave a message to see my heart dr can get anything going but I don't think I'll hold my breath.

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Medicare will not pay for cardiac rehab for a Septal Myectomy (which I think is ridiculous since it is open heart surgery) unless they repaired your mitral valve.

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@lindalou1117

I had my surgery October 1st. I purchased a recliner which really helped to sleep in. I also had a lot of clean washcloths for my shower including a shower chair. Other than that it takes time. I am still recovering.

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The recliner was electric since you will not be able to manually do it, too much pressure on the sternum

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@lindalou1117

Medicare will not pay for cardiac rehab for a Septal Myectomy (which I think is ridiculous since it is open heart surgery) unless they repaired your mitral valve.

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Medicare paid for my husbands cardiac rehab following his septal myectomy October 2018

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@sheim

I had an Extended Septal Myectomy and excision of Papillary muscle. Was SUPPOSE to start Rehab within 2 weeks but could not get in until 7 weeks. Now I'm finding the Rehab Center can't get a clear answer on if Medicare will cover it. Has anyone had this and have any issues with Medicare? I did leave a message to see my heart dr can get anything going but I don't think I'll hold my breath.

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Medicare covered the 80% of everything for his septal myectomy last October our supplemental paid the rest. We traveled from San Diego to Rochester .

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@lindalou1117

I had my surgery October 1st. I purchased a recliner which really helped to sleep in. I also had a lot of clean washcloths for my shower including a shower chair. Other than that it takes time. I am still recovering.

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recovery is a very personal thing, so don't judge yourself on how others recover. Take care of yourself

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I am 3 1/2 weeks recovering and I’m doing well except my back pain is excruciating I’ve had a massage I’m taking Tylenol does anybody have any suggestions of what I can do

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I had the septal myectomy about 4 1/2 weeks ago. was in the hospital for 7 days. when I got home, I had lots of pain in the chest incision area and bone pain. I sat and slept in a lift char for about a week, then I was able to get into my own bed the next week. had to lay on my back only for the next couple of weeks. right at the 4th week I stopped taking Tylenol and noticed the scars, wounds and bone have significant healing, every day for the last week I have noticeably felt better every day. now I have little pain. If I move the wrong way or do something strenuous I get some pain. in 2 days it will be the 5 week mark since my surgery. And I am actually feeling really good. I start my cardiac rehab in 2 days. I will admit I seem to have some muscle pain in my back shoulder blade areas when I stretch. Also for the first few weeks, I was very short of breath. somewhere around 3 weeks that went away and my breathing got better and now I feel almost back to normal. I have also noticed the symptoms of the HCM are mostly gone now. so the operation was a success. It is hard to describe, but I feel really good and have motivation to do things.

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—What were your HCM symptoms before surgery?

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@quinn

Thank you so much lynnkay.
I truly appreciate your response. Such a brutal experience. I certainly hope someone was with you to help you through. Great idea to work with a chiropractor. My insurance is so pitiful, I’ll have to depend on the meds alone for pain control. I’d love to know why you had to wait five weeks to begin cardiac rehab. If you have time and are willing to live through what sounds like an painful journey. If you had it to do over, are there things you would change?
Bless You.
Quinn

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How long did your back pain last? What helped you with it
Thank you
Linda Reynolds

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@archer

—What were your HCM symptoms before surgery?

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shortness of breath, some pressure in my chest and I was not comfortable laying on my back. I could also hear the "sloshing". Dizziness when getting up and moving around. was not able to walk up stairs.

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