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Looking for surgical outcome results...

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Dee Find out more about Dee
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  • Looking for surgical outcome results...

    I'm trying to figure out how to find specific results from surgeons doing myectomies and/or mitral valve repair/replacement on CHILDREN. Does anyone have any suggestions on where to start looking for this information if it's even available?

    Dee
    Dee, Mom to Dylan
    (Almost 7 yrs old, HOCM, Endocarditis/Stroke 1/01, Myectomy/Valve Repair 4/04)

  • #2
    Re: Looking for surgical outcome results...

    What do you want to know??
    There was an article done a few years ago from the group at Mayo - Danielson is 2nd author - -showing the 20+ yrs exp. from the MAYO including kids--they nearly all did extremely well.

    Lisa
    Knowledge is power ... Stay informed!
    YOU can make a difference - all you have to do is try!

    Dx age 12 current age 46 and counting!
    lost: 5 family members to HCM (SCD, Stroke, CHF)
    Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
    Therapy - ICD (implanted 97, 01, 04 and 11, medication
    Currently not obstructed
    Complications - unnecessary pacemaker and stroke (unrelated to each other)

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    • #3
      Re: Looking for surgical outcome results...

      I'm trying to get an idea of who is doing the most myectomies and mitral valve repair/replacements on children and what kind of success they're having. I'd like to try and make sure that when Dylan has his done that it's by someone who has both experience and success under his/her belt.
      Dee, Mom to Dylan
      (Almost 7 yrs old, HOCM, Endocarditis/Stroke 1/01, Myectomy/Valve Repair 4/04)

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      • #4
        Re: Looking for surgical outcome results...

        Hi Dee,

        My kids had their myectomy's at Children's Hospital of Milwaukee by a thoracic surgeion named Dr. Tweddle. He was marvelous. He also did Krista's mitral valve replacement. They are thorough and take great care of the kids. I don't know if they have any statistics posted anywhere though.

        Hope this helps some.
        Michelle - mom to Krista and Tyler both HCM
        Krista surgeries: 3/97 myectomy, 2/99 mitral valve replacement
        Tyler surgery: 1/98 myectomy

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        • #5
          Re: Looking for surgical outcome results...

          Moms of kids here sometimes find my story encouraging.
          I had an obstruction removed at age 10. Nearly 27 years later, I am still here. I am on a beta blocker now and have been told I may need surgery again someday. Keep in mind, though, that it was a mid-1970s version of the surgery. With decades of medicial advancements, your child could have even better results.
          I wish you the best!
          pickaback

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          • #6
            Re: Looking for surgical outcome results...

            Thanks for the story from a "birds eye view!"
            I hope the next 27 years are uneventful!

            Lisa
            Knowledge is power ... Stay informed!
            YOU can make a difference - all you have to do is try!

            Dx age 12 current age 46 and counting!
            lost: 5 family members to HCM (SCD, Stroke, CHF)
            Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
            Therapy - ICD (implanted 97, 01, 04 and 11, medication
            Currently not obstructed
            Complications - unnecessary pacemaker and stroke (unrelated to each other)

            Comment


            • #7
              Re: Looking for surgical outcome results...

              Pickaback, You sure made my day with sharing your experience. Thanks, Linda

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