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Does it ever get clear?


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Pam Alexson single mother of 3 wonderful young adults;a special ed teacher, an RN and a senior accountant.
Pam Alexson
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  • Does it ever get clear?

    Well I just had to post this one.
    As we have just been answering questions re: MRI's and AICD's, I come to have even more confusion regarding safety and an AICD and EMG ( nerve studies using electrostimulation).

    Last month my studies were cancelled due to the neurologist not being comfortable w/ turning on and off my devise w/ my EP not at the hospital where the EMG was to be done. Now yesterday at the hospital where my EP is, the neurologist booked the EMG. I just spoke to them and they at the neurophysiology lab said my AICD does not have to be shut off

    Well of course I informed them that the manufacturer and individual rep said absolutely it must be turned off and above all, my EP says so too. ( I am sorry ) , but the "twart" said, " mam , I will check again we just conducted studies about the safety of EMg's w/ devises and have determined it is not necessary to turn the devise off for the studies."

    At this point I am laughing in the twilight zone at for one thing the shear stupidty that this department assume I would give them the go ahead based on a study that they conducted on some unsuspecting guinea pigs( 2 legged or 4 legged).

    I immediately called my doc at the arrythmia clinic and they were all as shocked as I was . My EP will get right on it and call me with the real deal.

    I continue to be amazed at how these scenarios keep occuring time and time again. How sure can we be? I wonder as I wander from dilema to dilema.

    Stay informed.
    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

  • #2
    Re: Does it ever get clear?

    You aren't the only one who has trouble getting good info. I have lots of trouble too. It's too long to post now, but after Friday maybe I can say if my kids have HCM or not. I don't think so at this point, but my medical staff needs a lot of help.


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


    • #3
      Re: Does it ever get clear?

      UFF DA!
      OK lets take a step back...

      If new data is available that is one thing - HOWEVER lets look at the "standard of care"?

      Has this new data been peer reviewed? Has it be duplicated? Has it been paid for by private funds, gov. funds or industry funds? What do we really know about this so called "new data".

      Data is just that - DATA - it becomes part of the medical liturature only after it has been peer reviewed and published.

      Listen to the manufacturer and the EP.

      Uff Da!
      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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