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Outflow Tract Obstruction

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  • Outflow Tract Obstruction

    Hello - I am from Australia and new to this, but was just wondering if anyone knows of any new treatments for Left Ventricular Outflow Tract obstruction that is caused by the septum becoming very stiff as opposed to thickened as in most HCMA cases. I was diagnosed a year ago and placed on a very high dose of beta blockers which have helped to some degree. Unfortunately my symptoms are worse on exercise - Cardiac output at rest is 3.1 and is unable to increase beyond this even at peak exercise. The mitral valve is also involved, along with systolic anterior wall movement. Last echo showed some minor dilation of right side of heart also. There has been a gradual decline in my health and ability to lead a 'normal' life over the past year.

    My quality of life is very low at the moment and I am just starting to see if I have any options available to me. I feel as though I am being left to deal with this one on my own. Any suggestions?

    Trehna - Western Australia

  • #2
    Welcome to the HCMA. I'm not an expert on your question, but I think that if medications can't help you much more with the stiff heart you may be a candidate in the future for a heart transplant. I understood you to say that the stiffness is causing the problems and not an obstruction? If it's obstruction and the meds aren't helping enough there are 2 surgeries that could help. One is myectomy which removes a portion of the muscle and the other is alcohol septal ablation, which is a controlled heart attack brought on by the introduction of alcohol directly to the heart through a catheter. You would need to consult with an expert to determine which procedure would be best suited for you. Please let us know if you have any other questions.

    Reenie
    Reenie

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

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    • #3
      You might also benefit from the drug disopyramide or Norpace. It reduces outflow tract obstruction, often in patients where beta blockers are not effective in relieving a large gradient at rest.

      I took large doses of beta blockers that didn't really help too much, but then when I switched to Norpace combined with beta blockers, my gradient reduced by 2/3, as did my SAM. I would try that before surgery or ablation.
      Daughter of Father with HCM
      Diagnosed with HCM 1999.
      Full term pregnancy - Son born 11/01
      ICD implanted 2/03; generator replaced 2/2005 and 2/2012
      Myectomy 8/11/06 - Joe Dearani - Mayo Clinic.

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      • #4
        Sometimes the heart becomes STIFF more so then thick - some of these cases are actually a disease "restrictive cardiomyopathy" sometimes a hypertrophic heart just gets stiff. What is your septal/left wall measurement? Do you have a family history of HCM?

        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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        • #5
          Hi

          I also have a stiff heart and iam waiting now to go on the transplant list they say my heart is very stiff but just not stiff enough yet, i'm just in limbo, I had a myectomy to take the obstruction about 15 months ago and since then i was told i have restrictive diastolic dysfunction with both ventricles, i hope everything will be ok with you and if you need anything please don't hesitate to ask

          Shirley
          Diagnosed 2003
          Myectomy 2-23-2004
          Husband: Ken
          Son: John diagnosed 2004
          Daughter: Janet (free of HCM)

          Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

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          • #6
            How exactly do they know if they muscle is becoming stiff or not?

            Mary S.

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