Please help - I need advice

[Guest guest]

I am back from Dr Oro's - I didn't have to have surgery.

After closer examination - my spinal cord had a very thin stream

of CSF going between it and my C2 vertebra. Thank goodness.

And in the sit up MRI - (ONLY in the sit up MRI) - I have flow

In the back of my cerebellum.

Another thing to be noted is - in the flexion/extension test for CCI - I passed

out during that part of the Dynamic Imaging MRI.

So - He couldn't justify opening me up for the 4th Chiari related surgery (3rd

by him) - in light of the condition I am in. He was very perplexed as to why he

didn't find what he was sure he would find. He was sad that he had to tell me

that he couldn't help me with all the pain. (I am having to take Morphine - me =

who bounced back from 6 lower back surgeries with little to no meds!!)

He said i have Major Nerve, Tendon and Muscle damage in the Chiari area from it

being compressed for so many years prior to being decompressed.

He ran quite a few tests - one of them was the Preliminary test for Vascular EDS

- I tested positive for that one. He also said that my Underscalp being so thin

also confirmed this diagnosis. Since he is not a VEDS specialist he was unable

to tell me if what I am going through would come from that. :-((

I sincerely respect him for holding to his oath of " First Do No Harm " .

BUT - now I am home in the same devastating condition I was in when I went up

there.

I have the symptoms of the following:

- C2 Spinal cord damage

- Thoracic Syrinx

Why would I have the symptoms and not have the damage?? Does anyone out there

have Vascular EDS? If you do - Please share with me - do the symptoms encompass

what I am going through??? Is VEDS painful? Would it be causing the severe pain

in the back of my head, neck, and T-spine? The severe numbness in my feet and

face?

Please help me.

I am at a loss.

Have a blessed day -

Terry Lynne

PS - sorry this is so long