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Alcohol Septal Ablation after unsuccessful Myectomy

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Musicara49 Find out more about Musicara49
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  • Alcohol Septal Ablation after unsuccessful Myectomy

    Hi Guys,
    I have passively looked at this blog ever since I was diagnosed with Obstructive HCM 5 years ago. However, I am in a conundrum and figured I should try to reach out. I feel like my cardiologists try their best but don't have the most experience with this stuff at the end of the day. At this point I feel defeated and frustrated. I am a 34 year old female. A little less than 3 years ago my obstruction, valve leakage and symptoms were very bad so I underwent a septal myectomy procedure at Sharp Grossmont in San Diego where I live. I seemed to recover well from the procedure aside from a few bouts of pericarditis. However, over the past year I have begun to feel terrible again. Recent ultra sounds show that my obstruction grew back and things are just as bad as they were when I had surgery in 2015. My cardiologist insists that it is continually getting worse and within the next year it will become dangerous again. He has recommended either a repeat surgery or alcohol septal ablation. A second opinion told me I may want to consider a transplant. From what I read online this is not a usual treatment for obstructive cardiomyopathy - so I'm having trouble trusting that opinion. I tried to get a referral to the Mayo Clinic for a more informed opinion and insurance denied it (not surprised). The idea of having open heart surgery every few years sounds physically and financially exhausting and I can't find much information online about alcohol septal ablation after a myectomy. From what I read, there are some major risks involved with alcohol septal ablation and I don't know if having a surgery prior to this will increase those risks or not. My cardioligist is unsure as well. I have agreed to have him do a procedure to map my veins and do a bubble test to see if I am even a candidate for ASA. But I'm not sure what to do next. I feel pressure from my doctors and family to make a move soon. Does anyone have any similar experience with this? Thanks for your time!
    Cara

  • #2
    Dear Cara.... Please call the HCMA office and make an appt to talk to Lisa. She has worked with many people to help them figure out their next step when facing both insurance and doctor issues. That being said, The most likely reason your myectomy failed is because not enough tissue was removed. It takes a particular skill, practice, training with experts....for a surgeon to be competent doing what is called an extended myectomy. I speak from personal experience, I had my myectomy done locally and all my symptoms came back within 6 mos of surgery. I ended up having the myectomy re-done at Mayo Clinic....and 4 years later I am doing great. You may indeed need another procedure but you need to get to an HCM Center of Excellence to be evaluated....and I doubt they would look to ASA as the best choice.
    I don't know anything about your insurance. But generally to appeal you need a cardiologist who will 100% go to bat for you that your case is unusual your surgery failed and you need to be referred to a Center that is known for working with difficult HCM cases and re doing failed surgeries, like Mayo.
    Do not give up, do not sign up for more local procedures....There are ways to work through this. Call Lisa and find out some options!!!
    After years of symptoms:
    Officially Diagnosed HOCM 2006
    Myectomy 3/11/13 at non-COE
    Extended Myectomy 7/23/14
    At Mayo with Dr. Joseph Dearani

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    • #3
      Hi Jill,
      You are such an angel! It gives me so much relief to hear from someone that has had a similar experience -and I'm so happy to hear that your second procedure has relieved your symptoms! I have felt like I've been stubborn or overly cautious - it helps so much to hear that it is valid for me to be hesitant about any more local procedures. I will definitely contact the HCMA office and get a hold of Lisa. Thank you for taking the time to respond!
      Cara

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