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Some questions from an HCM n00b

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Spalding Find out more about Spalding
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  • Some questions from an HCM n00b

    If they put an ICD in me, it means I can't have an MRI, so what if that is needed in the future if my symptoms worsen and I need to consider a myectomy?

    Can I use older-style headphones (magnets) with my ICD? Is there a better type to use, probably the smaller the better?

    My uncle had fainting that led him to get a myectomy which fixed him right up for 20 years now. My father had fainting and a pacemaker fixed him up for about 5 so far. So does the myectomy help with arrythmias by removing some of the bad cells in the septum? I think what my doctor said was there was no way to know what caused my fainting, but now with the ICD we will know if it happens again, if it was fibrillation or blood flow blockage. So does HCM have two distinct modes, blood flow obstruction and arrythmia?
    First major HCM symptoms at age 50
    ICD 6/06

  • #2
    Re: Some questions from an HCM n00b

    Two point for the last question YES HCM has two faces - pump problems- either obstruction or heart failure symptoms and rythm problems.

    You have lots of questions that can be answered on the website. It may be helpful to read the site a little more in detail.

    We will talk soon.

    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: Some questions from an HCM n00b

      Myectomy doesn't remove bad cells per se. Instead it removes a 'bump in the road' for the blood flow, called obstruction. There is sometimes a part of the septum that gets thick and literally obstructs blood flow, which cause the pressures in the heart to escalate and usually causes some mitral valve regurgitation. A surgeon can go in and remove some of this muscle tissue to relieve the obstruction and the blood can flow properly through the heart and out the aortic valve. I hope this helps you understand a little.

      Reenie
      Reenie

      ****************
      Husband has HCM.
      3 kids - ages 23, 21, & 19. All presently clear of HCM.

      Comment


      • #4
        Re: Some questions from an HCM n00b

        I was looking for the answer as to why my uncle doesn't seem to suffer from arrythmias like my father and I apparently do, so I was theorizing that if my uncle had a lot of the unoriented cells cut out during his myectomy if that was enough to turn the balance, since they are suspected of causing the electrical problems.

        Lisa, I saw on Amazon that your book in paperback is not out yet. Do you have any idea when it will be? I'll call soon, thanks.
        First major HCM symptoms at age 50
        ICD 6/06

        Comment


        • #5
          Re: Some questions from an HCM n00b

          The myectomy will not remove the cells from all over the heart - only from the area in the septum. Some patients with HCM just do not have rythm problems - others do. It is part of the unpredictable nature of the condition.

          The 1st edition of the book is out of print. Funny you should ask about the 2nd edition - the galley proof is sitting on my desk! I better get to that ASAP!
          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


          • #6
            Re: Some questions from an HCM n00b

            I guess the volume is low, although if they say .2 to .5% of the population, in the US that means up to about 1.4 million people!

            Yup, you better get to work - I'm waiting!

            Oh, and I meant that I thought the bad cells were mostly the hypertrophic ones in the septum, so a myectomy should remove them preferentially and increase the ratio of good to bad cells, but I suppose it really depends on where the cells are that trigger the heartbeat.
            Last edited by Spalding; 06-19-2006, 02:42 PM.
            First major HCM symptoms at age 50
            ICD 6/06

            Comment


            • #7
              Re: Some questions from an HCM n00b

              Good thought but that is not how HCM works - the cell structure is wrong from the cellular level all over the heart.

              Give me a call tomorrow and we will go over HCM from A-Z

              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

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