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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: can anyone point me in the right direction

NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › EDS/MS/Chiari › can anyone point me in the right direction › Reply To: can anyone point me in the right direction

February 17, 2014 at 9:11 am #4880
Barbara
Participant

Hi,
Of course surgery is one option. I haven’t had surgery, I had a head and neck injury in 2002, here in the UK I have been unable to get surgery, instead they are using the ‘conservative’ treatment of a Philadelphia Collar (and for a few years a body brace) 24/7, it seems extremely cumbersome at first because it puts your head back in it’s rightful place (instead of hung forwards!) for maximum CSF flow (which of course your body isn’t used to!) but eventually you get used to it and as your symptoms improve, you’re GLAD of it. I don’t even notice it now.

The thing is with the pannus, that’s your bodies defence, if anything needs removing it would be the rogue part of the odontoid but even then, without stability, your efforts are futile, you need to work on keeping it stable.

Without a doubt you need a collar, not a soft collar either, as this doesn’t support your head, the best collar I’ve found is a philadelphia collar (but you do need to wash it daily and wear liners, for comfort!).

Also ensure you get Vitamin C regularly throughout the day, and make sure you eat sufficient protein everyday because without either of these, your body will struggle to make collagen. You need your body to make the best collagen it can, to produce strong ligaments at the cranio-cervical junction because your head is held on by ligaments, there’s no bones holding it.

If you have bone pain, get your vitamin D levels checked, a supplement can make all the difference. Massage helps me with the body pain but the collar severely reduced my overnight body pain. An epsom salt bath helps your body replenish Magnesium, which eases the muscle pain. If you get leg pain in bed, make sure you keep your legs 6″ lower than your bottom.

If you have energy issues you are probably B Vitamin deficient too, a supplement of these helps, even if you eat well, as often our gut issues hinder absorption.

Don’t forget, try raising the head of your bed, or sleep sitting up.
Let me know how you go on
Barbara
(UK)

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