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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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Reply To: Dr Diana, Barbara… or anyone willing to help!

NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › POTS › Dr Diana, Barbara… or anyone willing to help! › Reply To: Dr Diana, Barbara… or anyone willing to help!

November 14, 2014 at 5:48 pm #5109
Barbara
Participant

Hi Kelly,
Well lets just put it this way. I have worn a philadelphia collar 24/7 since 2007, in fact for the first few years I also wore it attached to a body brace, which held most of my upper back fairly rigid too. These days I still wear the collar 24/7 (wonderfully pain free, by the way – in contrast to the severe lower ‘back of head’ pain, that I endured for 5 years, prior to the collar, following my fall!). The collar also diminished other various body pains to a more tolerable level and the most severe pain, which I endured several times each night, it irradicated altogether (absolutely wonderful!).

I can still move my head and neck within the collar but it’s controlled – i.e. it stops me from going into full flexion and compressing my brainstem, it also stops me from making sharp movements, it holds my head in a good relationship with my neck, allowing optimum movement of cerebrospinal fluid between inside my skull and spinal column, at all times.

I take it off every day to wash the skin area and the collar (and change the linings – very important to stop skin reactions). This year, I have also occasionally sat with it off (if I know I’m going to be sitting still!). I can report that there is nothing at all deficient in my muscles, they all work as they did before my accident in 2002, there is no pain – nor is there any head drop, I am fully upright. Note, I suffered head drop for 5 years following my accident, prior to my collar being fitted.

I still have full range of motion of my spine and the only restriction I have, is that of rotation at the head/neck junction but, having said that, it is the same level of restriction that became apparent immediately after my fall, it’s certainly no worse and at least now, it’s pain free.

I should point out that you need to make sure the collar is the right size.
Regards
Barbara
(UK)

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