Young Patients Septal Myectomy and symptoms

[HCMp26]

Hi All,

Has anyone in their 30's undergone septal myectomy or alcohol ablation? I would like to know the recovery time,how they feel now? Has the symptoms improved or regrowth of septum? Have they had arrhythmias after the surgery?
Sorry for all the questions. I am considering myectomy after unsuccessful attempts on medications.

Thanks in Advance.

[krysteno]

Me!! I’m 31/F and had an apical myectomy when I was 29. Best decision I could’ve made and I’d do it all over again if I had to. My advice is to be sure you’re getting the procedure done at a center of excellence. I went to Dr. Schaff for mine (the inventor of the procedure) and it was worth the travel for it.

Before the myectomy, my husband and I were told no kids. But after the myectomy that changed and I’m now a momma to a 8 week old baby. I can climb stairs without feeling like I’m 90 years old. I can walk out to the backyard and look at my husband’s garden with him and bend over and look at everything without feeling like all the blood is rushing to my head. I can finally sit still and not always be distracted by the constant thuds in my chest. I would always space out because I had anxiety from all my symptoms and would wonder each time my heart was pounding or fluttering, “Is this the time I pass out?” And I don’t have any of that anymore. I got my life back.

[HCMp26]

Thanks Krysteno I can totally echo your feeling of not able to do your daily routine tasks by not having the feeling of dizziness and the constant awareness of those thuds..what makes it worse for me is I already have a one year old kid who keeps me on my toes.

I am 32/M and live in Australia andwe don’t have COE’s here but moderators here have motivated me to look for surgeons who have done more Myectomies In either Sydney and Melbourne .i am due to meet a local surgeon next month here in Perth.
I am glad to hear positive stories about myectomies and wish you good health !

[HCMp26]

Me!! I’m 31/F and had an apical myectomy when I was 29. Best decision I could’ve made and I’d do it all over again if I had to. My advice is to be sure you’re getting the procedure done at a center of excellence. I went to Dr. Schaff for mine (the inventor of the procedure) and it was worth the travel for it.

Before the myectomy, my husband and I were told no kids. But after the myectomy that changed and I’m now a momma to a 8 week old baby. I can climb stairs without feeling like I’m 90 years old. I can walk out to the backyard and look at my husband’s garden with him and bend over and look at everything without feeling like all the blood is rushing to my head. I can finally sit still and not always be distracted by the constant thuds in my chest. I would always space out because I had anxiety from all my symptoms and would wonder each time my heart was pounding or fluttering, “Is this the time I pass out?” And I don’t have any of that anymore. I got my life back.

Hi Krysteno,
What medications are you on post myectomy? have you experienced any arrhythmias?

[csambitions]

I had my procedure done 5 years ago at 26. The doctors said it was successful, the gradient was reduced significantly but unfortunately I am still symptomatic, with shortness of breathe. After seeing my doctor today, they are recommending another ablation, which I am seriously considering. First time around, the procedure wasn't bad, I was hospitalized for about 3 days but I was able to resume my activities. I heard the ablation was successful for most people, so I would deeply consider it.

[JillC]

CS - I'm not young .... but I had a surgical myectomy done at a Center of Excellence.....Mayo Clinic and the outcome was a gradient of 0-5 mmhg 4 years ago and has remained the same.... with chest pain and SOB gone. I'm not sure where you had your alcohol Ablation done or why it was done in someone so young AND only gave you " significant reduction " in your gradient, rather than eliminating it.
If it were me, I would really think twice about going back for a repeat. I would get an evaluation at a center of Excellence and review their recommendations. In general alcohol Ablation ....is not the first recommendation for reducing obstruction in HCM.....for many reasons which I wont list right now but There are numerous articles by HCM experts stating this. You may want to make a call to the HCMA office and get an idea of what the AHA guidelines / recommendations for quality care of HCM patients are and how to choose a next step in your process.