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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: MRI pictures of my head, Chiari and hydrocephalus?

NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › EDS/MS/Chiari › MRI pictures of my head, Chiari and hydrocephalus? › Reply To: MRI pictures of my head, Chiari and hydrocephalus?

July 28, 2013 at 7:13 pm #3973
Barbara
Participant

Hi Samuel,
Regarding the Philadelphia collar, I have been wearing one continuously, all day and all night, for 6 years. You’ll be lucky if you find one that’s a perfect fit and, as a consequence I still use my neck muscles a little, throughout the daytime, within the constraints of the collar. I have to say that when it’s taken off, to change the linings (and wash the skin underneath) on a daily basis, I have no apparent weakness in my neck muscles and I can hold my head up (centred nicely above my shoulders) much better than I could in 2007, when I was first issued with a rigid collar and, what’s more, I can hold it up without any difficulty. It’s just a natural position for me now. Whereas following the accident, from 2002 until 2007, my head was ‘hung’ forwards.

Bearing this in mind, you now have to consider whether you wish to risk further damage to your brainstem, caused by the unrestricted cranio-cervical instability. Do you see what I’m getting at ? So what if you’re neck muscles do weaken ? – you can always wear a brace, if that does turn out to be the case but once your brainstem is permanently damaged, it’s a totally different ball-game.

Are you absolutely sure that you’ve never had a head or neck injury ? Maybe something you’d forgotten about that might have happened whilst you were playing sport, maybe some years in the past ?

Who diagnosed your cranio-cervical instability ? and what was their suggested treatment ? Which part of Germany are you in, anywhere near Bad Wildungen ?
Regards
Barbara
(UK)

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