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VioletParticipant
I never knew that a doctor’s office could take on the proportions of a multilevel airport terminal.
Funny but sad.
Also sad how we have to read our own MRIs.
It sure doesn’t look like nothing. Sorry you have that pain.
Did you have any kind of injury that could have caused the split?
VioletParticipanthe now wants an MRI with dye injected to check for cerebrospinal fluid leakage. I am worried about the dye. I really don’t like having things injected into me. Is this the only way to diagnose and check the fluid?
I don’t like chemicals but I would let them inject dye if it helps diagnosis. I read up on dyes and there are a few types. I would read about whichever dye they plan to use, if you proceed with it.
VioletParticipantPlease, please do a printed version as soon as you can. I want to share your theory with doctors and EDS friends in printed form. (They won’t read electronic versions.)
I can donate labor if you can use anything I can do.
VioletParticipantTheir 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.
December 4, 2014 at 12:59 am in reply to: Uncomfortable disconnected feeling in base of neck, into shoulders #5132VioletParticipantBut I also suffer from pain in the occipital bone in the back of my head, as well as base of skull locking up making it painful and difficult to move my head. it feels like my head is going to literally become detached from my spine and causes a lot of anxiety. I also have the most disturbing tingling and tightness in the back and base of my head
Maybe this could be craniocervical instability?
I need to read much more about CCI. I found one person who said they felt their head was falling off their spine and thought it was CCI.
I feel that way every day. I’m not as bad if my neck muscles are rested.
I can relate to your username.
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