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maryflynn Find out more about maryflynn
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  • would like advice

    I would like some advice. My son, who is now 17, was diagnosed with HCM at age 14. We went for our annual checkup at Mayo this past week. He had an increase in septal thickness to 27 mm (from 20 mm one year ago) with a outflow tract gradient up to 112 (72 last year). He also has backflow of blood into the atrium with larger atriam size. He already has dual chamber pacing which they did 2 years ago to improve outflow tract obstruction.

    He gets sob with activity, has problems with chest pain after large meals and occasional chest pain(even at rest).

    Mayo increased his atenolol. THey stated that in the future he may need to have myectomy/ablation based on increase in symptoms.

    My question....seems like the pressure is awfully high...is there a problem with waiting on surgical intervention? In adddition, I read on this website that pacing should be proceeded with caution.

    When is surgery recommended? Only on symptoms? AS his pressure and thickness is high, will surgery be inevitable. Mayo states that surgery would only be indicated if symptoms progress. With that much pressuree gradient...what can happen...heart failure?

  • #2
    Re: would like advice

    Hi and welcome. You are asking a lot of difficult questions. The best answer I can give you is to call Lisa at the phone number at the bottom of this page. The Mayo is a great facility and has HCM experts. She can help determine if your doctor is one of them. If the doctor is a specialist then I would take him at his word.

    Reenie
    Reenie

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

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    • #3
      Re: would like advice

      Are you being seen by the peds side or the adult side at Mayo?

      Septal reduction is needed when the gradient is too high (anything over 50 is in the surgical range) and/or when symtoms are not well tolorated. I am a bit surprised that 2 yrs ago they attempted DDD pacing - we know it does not work well.

      Myectomy is going to likely be the next step and I would suggest sooner than later as the longer the obstruction is there the more damage that can be done to the atria and MV.

      Call if you need anything.
      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
        Re: would like advice

        I was first diagnosed with HCM when I entered the United States Air Force in 1976. I am currently 50 years old and extremely active thanks to alcohol ablation. What you describe happening to your son really concerns me. Yes, his gradient is high. Mine reached 97 before I requested the procedure. I was very fortunate to have had the opportunity to be treated by Dr William Spencer who worked at Baylor Heart Institue in Houston, Texas. My suggestion to you is simple ... talk to doctors who specialize in this disease. I never took the advice of just one doctor. You and your son have to check out all possible treatments available. Don't settle on one procedure when other less evasive procedures might be available. Also, I was never seen on an annual basis but on a semi-annual basis and more is necessary. True, I had the Air Force to help with follow-up's but it was the civilian community who treated me.
        You seem to be concerned about heart failure and for good reason. Stay in contact with your doctor and advise him or her of any changes. Remember, this is your son and nothing is more important than his well-being. If you would like to contact me personally, my e-mail address is [email protected]. I will also give you my home phone number if you want it. I've been through it all short of open heart surgery and totally understand your concerns. God Bless you and your son. Hope to hear from you.

        Sincerely,

        Jay Duke

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        • #5
          Re: would like advice

          Hello & welcome,

          I see you joined this web site on August 31st. On August 31st I was in surgery (at the Cleveland Clinic) having a Myectomy.

          I am 49 years old. My gradient was 125 at rest (and 180 under load).

          I had very little pain from very little pain from the operation. It was not ˝ as bad as I thought it was going to be.

          I was up and walking around the hospital 2 days later. I was out of the hospital on the 5th day. I flew home no problem & I have been walking around the block from the 1st day I got home. By the second week I was walking ľ miles 2-3 times a day.

          Today is 26 days post myectomy and I am doing great.

          I only found out I had HOCM the first week of June. I spoke to LISA and listened to her advice on preparing your body for surgery.

          I will send you my phone #s in a private message. Please feel free to call if I can be any comfort to you or your son.

          Stuart Schwartz
          Cleveland Myectomy Club
          August 31, 2004

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