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Apical? Left side? Yamaguchi? Which one??????

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  • Apical? Left side? Yamaguchi? Which one??????

    Hi, All...

    (hope this posts; have been having 'technical difficulties")

    It's been a while since I have posted! (forgive me if this is not in the correct place - just trying to get through!)

    My husband is the one with HCM. He went to CC - oh, about a year ago, and at the time, Dr. Lever told him that he had apical HCM. That his thickness was only at the tip of his heart. He called it 'Yamaguchi syndrome". He adjusted his current med regimen of beta blockers and that was about it.

    Tom (hubby) was doing rather well for quite some time up until recently. He was scheduled for his annual 'ehco' in April, but I made a call to the cardiologist here as his symptoms of extreme fatigue, weakness, chest pain and even nauseau (anyone else have that?) worsened and his 'good days' were few and far between.. every day for the past week or so was a 'bad' one.

    He went for an echo on Friday...the tech doing the echo spotted the hypertrophy at the tip of his heart right away, but also told him, that he saw a lot of hypertrophy also all around the LEFT side. (His comment was, I'm not the doctor, but I see what I see....)

    Interestingly enough, his original echo (from doctor here) prior to going to CC stated ........"severe concentric left ventricular hypertrophy" , but, he was told by Dr. Lever that he had "Yamaguchi syndrome".

    ????? Is this one and the same? Does this still make his HCM of the apical type? Apical = left side????

    With all due respect to Dr. Lever, did he miss something? (Tom took the records with him to Cleveland)

    Of course, my main concern is a proper diagnosis - figuring out this puzzle of a disease(!) and finding SOMETHING that will make him feel better and improve his quality of life....forgive me for being dramatic and venting, but I am shocked at times at how bad he looks; his face looks sallow and he looks so tired......

    Please share your comments and shed some light on this while we await the tests results!

    Thanks so much!

  • #2
    Re: Apical? Left side? Yamaguchi? Which one??????

    Most HCM hearts have hypertrophy in the left ventricle wall AND in the septum. They are not mutually exclusive. Apical/Yamaguchi is when the septal thickening is at the bottom. It doesn't matter to that diagnosis what the left ventricle is doing.

    It isn't good form for the echo tech to be talking about stuff they don't understand. yes, there are a lot of great techs out there, but some not so great.

    Get all the echos from everyone and compare them and have Lever do the same.

    good luck,

    s

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    • #3
      Re: Apical? Left side? Yamaguchi? Which one??????

      Hi,

      I just have to put in a good word for techs. If I had not had a talky tech who told me my septum was enlarged and hitting my valves, I would never have discovered I had HCM. The cardiologist decided I had a hyperdynamic heart, but missed the HCM entirely. I did not remember the hyperdynamic name, so I discovered the HCM accidentally when I put the things the tech had said along with some of the stuff the docs had told me about arrythmias and fainting into Google and this site turned up. Subsequent tests proved the tech was right and the cardiologist was wrong. I realize this is not a specialist from the Cleveland Clinic. But I just wanted to give a great big thanks for the talky tech!

      Rhoda

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      • #4
        Re: Apical? Left side? Yamaguchi? Which one??????

        Rhoda I had a similar incident , after the same tech came down from Boston 2 times 2 months apart in 2000 to do my ehoes she said to me this is the same thing your heart showed the last time and in 1995 when your 1st echo was done . She said," what are you doing about your heart condition, I've had 2 friends die from what you have." After I picked my chin up off the floor I said is it HCM? She said yuhhh, what did you think you have been told? WHEN SHE REALIZED MY SHOCK SHE SAID LOOK YOU HAVE A RIGHT TO KNOW AND A VERY GOOD REASON TO GET HELP AND FAST! She told me she liked my doc very much but if I were you I'd seek another opinion and sooner not later. When he came in they argued in front of me about the interpretation over and over as she pointed things out to him. She even grabbed my arm and said we are disagreeing so we can reach an agreement. That never happened she left the room and he waited til she closed the door and said look you have only a little abnormality you don't have HCM and if you lose 100 lbs you'll be fine , you're heart is fine! I am also thankfull she opened her mouth I probably would have died listening to him. It can go either way with techs as I have found. 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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        • #5
          Re: Apical? Left side? Yamaguchi? Which one??????

          it sounds like that tech knew her doctor was an idiot. i'm not against "talky techs" but they can be wrong too --just like the doctors. i think the key is to get corroboration.

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          • #6
            Re: Apical? Left side? Yamaguchi? Which one??????

            It’s a damn shame there are no signs to tell you who is competent and who is an idiot – and both inhabit all walks of life. All we can do to protect ourselves is to hear everything, and check up on everything, and then use our G-d given brains to figure out who is who, and what’s what. This is not an easy task, but in the final analysis, our brains are our final protection against all life throws at us.

            I thank the Lord for my computer and the ready access to pertinent data on just about everything. For HCM these boards are the greatest source of combined brainpower I have ever found. I’d like to thank each and every one of you who help me protect my life.
            Burt

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