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Cervical Instability CCI / AAI ?
Posted: 20 July 2019 03:29 AM   [ Ignore ]  
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Hi,
I’ve gotten little help in Facebook groups.  Since only one CCI group exists.

My story is long but I’ll try to sum up symptoms in order
- Orthostatic hypotension (was rare but now often)
- Clunking at I think C0 or C1 (no oain)
- corn flake grinding at Occipital membrane area and in Rt Occipital Condyle
- Tinnitus
- Insomnia (not too bad Noel)
- Occipital pressure (worsening)
- only left eye is aging / blurry
- Facet joint pain C0 - C2
- Hearing goes dim, like a quick shut off
- pulse in right ear (rare)
- whooshing noise when leaning over (most of the time)
- now I can rotate or tilt my head/neck *** this is freaking me out

Surgeons- all 3 said nothing they can do! Which sure I’m glad - I fear that

I had a few times my vision was like wearing readers for distance and felt like I was wearing glasses and this happens 2 X after crying bad, and last night when my skull was only resting on a donut pillow and I dosed off and got up minutes after.

I suspected CSF Leak, cus I had epidurals
I suspect CCI

My DMX was last Nov and I’m worse since then
https://youtu.be/9TYQozyh144

I’ll post some MRI shots

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Posted: 20 July 2019 03:34 AM   [ Ignore ]   [ # 1 ]  
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More images

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Posted: 20 July 2019 10:07 AM   [ Ignore ]   [ # 2 ]  
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Hi Rob,
I am also currently exploring this as a cause for my severe chronic presyncope, orthostatic intolerance and headaches. I have been diagnosed with cranial settling by Dr Gilete in Barcelona, but another doctor also said scans normal.

I am not a radiologist, but your spinal cord looks to be pinched lower down in the neck in the second and third pictures.

Have you sent scans to an EDS literate neurosurgeon?

B xxx

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Posted: 20 July 2019 01:12 PM   [ Ignore ]   [ # 3 ]  
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I have spoken to a Chiari Surgeon who kind of was a chop shop - he said no reason but wanted me to do traction, where I’m very hesitant to pull on my neck that is unstable.  And God forbid partial dislocation from torn ligaments.

I hate that there is no standardized format to be seen by all specialists.  Last surgeon told me to see a psychiatrist.  Granted I sure am depressed over this and anxious I’ll need surgery - makes me terrified.

Will see what the Neurologist says after he gets the report.  And then see what scan is next or whatnot.

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Posted: 20 July 2019 05:23 PM   [ Ignore ]   [ # 4 ]  
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New finding
Somehow laying down on a pillow supine - where my skull lays on a pillow I feel a pushing and even tiny mini corn flake crispy sounds.

But the aftermath for being there I either got blurry vision that doesn’t last tong after I get up.
And now I’m really heightened depression, very bad!

If I press in on my forehead I hear he mini crispy sounds again… total guess it’s around the Odontoid or Facet of C0/1

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