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COE in New Jersey or Pennsylvania for newly diagnosed HOCM

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Lori Franks Find out more about Lori Franks
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  • COE in New Jersey or Pennsylvania for newly diagnosed HOCM

    My husband is 39 years old. He was recently diagnosed with "significant" obstructive HCM. We were referred to Penn Cardiology for further treatment and surgery. He is looking at the septal myectomy in the very near future (within 3 months). He also has mitral valve regurgitation, which I understand is common. We saw Dr
    Zimmer who is a Heart Failure Specialist at Penn Cardiology. He is treating my husband's HOCM aggressively and urgently, but not as an emergency. Dr. Zimmer was fantastic. He ordered a few tests prior to meeting with a surgeon to make sure the test indicate that the septal myectomy is the best approach, and to be sure there isnt anything preventing him for having the surgery. My concern is finding, and knowing that the surgeon is experienced, successful, and educated with this condition. How do I find a COE in our area? (specifically heart surgeons) ANY suggestions or advice is greatly appreciated. Thank you in advance for taking the time to help us and others who are new and scared.

  • #2
    We have a COE at UPenn led by Dr. Owens. Their contact info is on the website, if you search by state. You can also find the contact info for the COE at Morristown, NJ, on the site as well.

    https://www.4hcm.org/coe

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    • #3
      Dear Lori,
      You are quite right in seeking out a very experienced surgeon. Even at an HCM Center of Excellence....The experience of the surgical team can be less than the HCM medical team Because every case of HCM does not require surgery. I believe three COEs that do the highest volume of Myectomies are Mayo Clinic Rochester, Cleveland Clinic And Tufts. My personal opinion (as someone who chose a non-COE close to home for my Myectomy and then had to have the surgery redone at Mayo Clinic) is that distance should not play a primary role in choosing your surgeon. Places like Mayo and Cleveland do over 200 myectomies per year and have pioneered surgical methods that may not be practiced as often at other centers. When you are interviewing a surgeon ask How many myectomies they do per year and how many years they have been doing them....Ask if they are doing extended myectomies rather than classic Morrow procedures....Also ask if they run into papillary muscle problems are they able to do muscle reimplantations? Are they generally able to repair rather than replace Mitral valves with problems? You might also Ask if you may speak to patients who have had myectomy done by them to find out their experiences.
      Many people ask the mechanic that is working on their car, more questions than they ask their heart surgeon....If asking these questions makes you uncomfortable.... just print out my list and tell them a friend who is a Cardiac ICU nurse told you to ask them ..... Which is true, I am an RN that worked ICU for over 20 years.
      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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