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I need to know what is going on


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shirleymahoney Born In Tulsa Oklahoma and have a wonderful husband and 2 great children Find out more about shirleymahoney
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  • I need to know what is going on

    Please someone tell me how is it you can use your hands and they go to sleep, i can be writing or using the mouse on the computer and my hand will go to sleep, i have alot of fluid too, i thought maybe that may be causing it but i don't know i get it when i'm not retaining too

    I hope everyone is doing well or as well as you can be with having this disease in our lives, have a great day

    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

  • #2
    Re: I need to know what is going on

    Hi Shirley

    I'm sorry, I really don't know why that is happening. My guess would be circulation problems. But I'm sure you have already thought of that.

    This is the pits. I sincerely hope you get all the health care you need and very soon. Are you on the transplant list yet?

    I hope you feel better.

    Hugs -- Eileen
    49 yrs. old
    Diagnosed at 31.
    Cardiac Arrest 2003, RF Ablation in AZ, no positive result -
    First ICD 2003 - In 2006 lead went bad, abandoned lead, threaded new one & new generator
    Myectomy 5-5-05 at The Cleveland Clinic - Dr. Lever & Dr. Smedira -heart surgeon.
    Currently have Grade 2 Diastolic Dysfunction with pulmonary hypertension & pulmonary edema.
    My brother passed away suddenly at 34 yrs old from HCM.
    2 teenage children, ages 17 and 15.


    • #3
      Re: I need to know what is going on

      Shirley, I'm sorry but I haven't a clue what's going on. I hope it gets better soon.


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


      • #4
        Re: I need to know what is going on

        My guess would be carpal tunnel syndrome. I have had this off and on for years. It tends to get worse when you have gained weight (either from fluid or just plain old weight). People who use their hands a great deal (with typing, computers, etc) tend to get it most often but not always. The numbness comes from the nerve in the wrist being impinged upon by surrounding tissues. Often times the symptoms are worse when you sleep. Mine wakes me up several times per night when I am having a flare up. You can buy splints to wear on your wrist at the grocery store or drug store to see if that helps. There are also drugs (prescription) and injections that the doctor (orthopedic or sports medicine) can give you to alleviate the symptoms. Sometimes you must have surgery. I had the surgery on my right wrist and it worked completely and was a very minor outpatient procedure. Mine is also bothersome when I hold something for a very long time (like a book or a telephone). Good luck. I know it can be a nuisance.


        • #5
          Re: I need to know what is going on

          Hi Shirley,

          This does certainly sound like carpel tunnel syndrome. The fluid does in fact increase the impingment on the nerve tunnel.

          When I awakened from my myectomy it nearly sent me through the roof, the numbing, throbbing, pain was so bad and they were so swollen . I had 18 + pounds put on me with the surgery so this was horrific. Fortunately I had thought ahead and even prepared my kids to try and understand the jibberish of a still intubated mother post surgery as I thought this might be a problem. They had my braces and immediately put them both on . WHAT A RELIEF.

          It is a must to wear them at night when our wrists drop out of allignment and at times that we are feeling the numbness and pain. I also have had in increasing intensity for 18 years. The surgery is finally going to be done in 2005 before the effect is permanent damage to the muscles and nerves.

          Good luck it is awfull.

          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