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myectomy/ICD question

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Joyce Leinart Find out more about Joyce Leinart
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  • myectomy/ICD question

    Today my new Cardio went over the echo I had done last Fri and he thinks a myectomy will be the next line of treatment. Last week he increased my Lasix by 20 mg and thinks it best to leave my meds alone until I see Dr. Lever on Oct 3. I have some relief from the CHF with this increase.

    I also saw an EP today and he thinks I am a borderline case for an ICD and wants to err on the side of caution and recommended I have one. The main reason for the EP’s recommendation is because I have had several episodes of near fainting. I have never passed out and have no one in our family to die of sudden death. My grandfather died in his late 50’s due to a “heart problem” this was not a sudden death but a progressive illness, as far as I can determine. Does anyone know or has anyone seen any research that a myectomy decreases the episodes of near syncope or syncope? If it does and that is the only reason my EP gives for recommending an ICD I am wondering if I would really need to have one. We discussed this and my EP said he just didn’t know the answer but that the Dr’s in Cleveland might have more information. My decision is to wait and talk to Dr. Lever. If anyone has any information they would be willing to share I would really appreciate the input.

    Sincerely,
    Joyce
    \"We are not human beings having a spiritual experience. We are spiritual beings having a human experience.\"
    Pierre Teilhard de Chardin

  • #2
    Joyce - It is possible that your pre-syncope is caused by obstruction and not arrythmia. If this is the case, the obstruction would be relieved by myectomy and therefore you might not suffer this symptom anymore. I think you are wise to wait until you hear what Dr. Lever has to say on the subject. He might have a totally different take on the whole thing.
    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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    • #3
      While I firmly believe in ICD treatment - it is not for everyone and it is not without risks. If I were in your situation I would wait until I consult with an HCM specialist and make my treatment choices with the benefit of all the information you can gather.

      If a myectomy may be in your future try to get yourself ready in mind and body for this - start walking as much as you can and eating very well. We are all here for you during your process.

      Be 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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      • #4
        Cynthia and Lisa,
        Thank you for the information and your take on my situation. It is a relief to have such a wonderful support system in the HCMA.

        Sincerely,
        Joyce
        \"We are not human beings having a spiritual experience. We are spiritual beings having a human experience.\"
        Pierre Teilhard de Chardin

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        • #5
          Joyce,

          I agree with Lisa and Cyn. You will get the full picture on the third . Keep us all posted . Thinking of you during this time ... positive thoughts.

          Pam
          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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