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Dr. Diana, both a doctor (therapeutic optometrist), and a recovered POTS and ME/CFS patient, offers help and hope for POTS, Dysautonomia, Ehlers-Danlos syndrome, Chronic Fatigue, Chronic Lyme, vascular abnormalities, Fibromyalgia, and Multiple Sclerosis. Dr. Diana is now working full time at POTS Care.

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rigid neck collar

NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › EDS/MS/Chiari › rigid neck collar

  • This topic has 4 replies, 2 voices, and was last updated 4 years, 7 months ago by grace.
Viewing 5 posts - 1 through 5 (of 5 total)
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    Posts
  • July 30, 2016 at 12:02 pm #1030
    grace
    Participant

    After suffering from EDS / CCI for 10 years, I have to switch to a hard neck collar due to the latest fall down in the garage. I am going to take Barbara’s advice to have Tracheotomy Philadelphia® Collar. Can any one wear the hard neck collar long time to give me information for following questions:

    1. I hear from some other CCI forums that neck muscles will atrophy if wear hard neck collar all the time, and there will be nothing to hold head up, as the joints and ligaments are damaged from the EDS. CRANIAL SETTLING is a risk if the neck muscles atrophy.

    2. Do you have some tips how to exercise the neck muscles to avoid atrophy when wearing the hard neck collars?

    Thanks,

    Grace

    July 30, 2016 at 7:50 pm #5996
    Barbara
    Participant

    Hi Grace,
    Yes I too have heard that said however, I can only go on my own experience, which is that I have been wearing a Philadelphia collar, with washable liners replaced daily (essential), for nigh on 9 years, 24/7 and in my case, each day when I remove the collar for cleaning, I have the same level of use of my neck muscles, as I had 9 years ago. In fact my neck feels stronger, much less painful and far less fragile, so one could say they are better than 9 years ago.

    I do appreciate that I have never spent more than a few minutes without the collar though, so perhaps am not qualified to comment on the affect that longer stressors would have on the head/neck but with the way I feel, I can’t see it being a problem, if ever I’m lucky enough for the ligaments to heal effectively. I would never regret wearing this collar at all, for it’s brought me great comfort, where for years there was only pain. Granted, it was cumbersome to start with but that’s of little consequence when you consider the great benefits it brought.

    Your head and neck can still move within the boundaries of the collar, you don’t just ‘slump’ within the collar, it’s just that your movement is restricted and the collar guards you against many possibly dangerous manoeuvres, so it’s functionally supportive.
    Regards
    Barbara
    (UK)

    July 31, 2016 at 9:34 am #5997
    grace
    Participant

    Barbara,

    Thanks for sharing the experiences. As it will be a new journey for me to wear a rigid neck collar so getting experiences from you really gives great comfort and sooth. Also, I found Philadelphia kept on having new style of neck collars after 1983 with new technology, like Philadelphia® A-Series® Collar , Philadelphia® C-Breeze® Collar , etc. Have you ever tried them to see if they have better quality than the original Philadelphia collar?

    Thanks,

    Grace

    July 31, 2016 at 6:33 pm #5998
    Barbara
    Participant

    No, not tried the new ones. My motto, if it ain’t broke, don’t fix it.

    See the post below for deeper analysis of the collars I’ve tried:-
    http://prettyill.com/forums/viewthread/575/#2883

    July 31, 2016 at 7:20 pm #5999
    grace
    Participant

    Thanks Barbara!

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