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  • Apical HCM??

    Any word on where we stand with ablations/myectomies for apical HCM patients at this point in time? Last I read, they were still in the "experimental" stages.
    Tom Mc.
    Apical HCM

  • #2
    I only know one center doing apical myectomys - The Mayo and they have only done a handful. There is no data as to if there is any improvement in quality of life, symptoms or anything else.
    When I know more...so will you all
    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


    • #3
      Re: Apical HCM??

      Where have all the Apicals gone. There have been no posts here for a very long time. Anyway, they only perform myectomies on Apical because alcohol ablation is not suitable for Apical. I would really like to hear from others with Apical, We are a very unique group, and although more prevalent in Japan, those people don't seem to post here,
      Lazam

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      • #4
        Re: Apical HCM??

        The research I've read indicates that it is more prevalent in the rest of the world than previously thought, but I'm reading the excerpt from Dr. Maron's letter below and he says apical accounts for about 3% of all HCM.

        Small studies have shown no increase in mortality in apical HCM than other kids--in fact even saying it is pretty benign.

        There was some discussion of apical HCM in 2006 in JAMA but it is $15 an article if you don't have a subscription.


        Prognosis of Apical Hypertrophic Cardiomyopathy
        Refaat
        JAMA.2007; 298: 2006

        Prognosis of Apical Hypertrophic Cardiomyopathy—Reply
        Barry J. Maron; Paolo Spirito
        JAMA 2007; 298: 2006-a.

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        • #5
          Re: Apical HCM??

          The echo that was done on my husband post myectomy showed "increased mid and apical gradient." This was never talked about to us prior to his surgery, which corrected his substantial LVOT.

          What is apical HCM? We asked why it wasn't corrected during his surgery, and were told that it can't be corrected surgically, but has to be done medically.

          We're a bit confused.

          Ellen

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          • #6
            Re: Apical HCM??

            See this thread:

            http://www.4hcm.org/forums/showthrea...ght=apical+HCM

            AND this thread:

            http://www.4hcm.org/forums/showthrea...ght=apical+HCM
            Dx @ 47 with HOCM & HF:11/00
            Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
            Lead failure,replaced 12/06.
            SF lead recall:07,extracted leads and new device 2012
            [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
            Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
            Genetic mutation 4/09, mother(d), brother, son, gene+
            Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin

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            • #7
              Re: Apical HCM??

              Thanks. Great links. Much appreciated.
              Ellen

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