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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: What could be wrong?

NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › EDS/MS/Chiari › What could be wrong? › Reply To: What could be wrong?

December 4, 2014 at 1:26 am #5133
Violet
Participant

Their method requires you to have nead/neck MRI’s in ‘flexion’ (head down), ‘neutral’ (straight up) and ‘extension’ (head back) positions. You then have to consider various angles and measurements, to assess whether it’s normal, or whether there’s CCI. Although it appears complex upon first reading, I managed to teach myself the method, so a radiologist should be able to pick it up, if they were instructed to do so.

Surgery has to be a last resort, so really you need to see if you can alleviate your problems by other means first.

Barbara, thank you so much for looking at my MRI. Very helpful!

I read many of your other posts (and will read the rest) and it seems you were happy with The Chiari Institute and reccommend them. I don’t want Chiari surgery (and mine is probably under 5mm) so do you think I should still go to TCI? I am considering going to them or another NS who would do the different upright MRIs and diagnose CCI.

I am very afraid of the pain while having the MRIs taken. Should I just get a Philadelphia collar on my own and forget about an official CCI diagnosis? So few doctors have any inkling about any of these conditions and I wonder if they would ignore or shrug at the CCI diagnosis. Has anyone been helped by the diagnosis?

I need a doctor to investigate with Cine MRI and other imaging. My symptoms match Dr. Diana’s theory well – hydrocephalus but low pressure below the skull. CCI seems to be a part of why my CSF flow is off, but a CCI diagnosis alone may not help.

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