Going to NYC TCI!!!!!

[dimples0925]

So I got in at TCI, anxious, nervous, excited all in one. NS here told me in Jan that he was scheduling surgery for me, have yet to hear back from his office which leaves me very confident in them....ugh! So in the meantime I sent my info to TCI and I see Dr. Kula on the 27th. He ordered more tests before I go. Would love any input on all my results so far as there are many other "little" findings so I'm curious what to expect. I'm not sure if I should push for lumbar mri as well cuz I haven't had one. So all findings so far, please share if you know anything:

-mild 5mm tonsillar ectopia, pointed in configuration, certainly crowding at level of foramen magnum
-decreased csf flow within fourth ventricle, foramen of magendie, and retrocerebellar cistern
-mild dextroscoliotic curvature thoracic spine
-thoracic cord terminates at superior L2 level which is low normal in position
-small right paracentral disc protrusion T2-3
-loss of normal cervical lordosis compatible with stable schmorl's nodes involving anterior aspect superior end plate of C7 and T1
-bilateral uncovertebral spurring, mild left sided foraminal narrowing C3-4. mild uncovertebral joint spurring C4-5 and C5-6. no canal stenosis or disc herniation.

I was in mva with whiplash 16 years ago, scholiosis diagnosed 18 years ago and thrown from horse 3 years ago fracturing 3 vertabrae T5-7.....any ideas what to expect next week? Thank you guys!

[selmaS]

I also had the flexion and extension xrays too....

Hmmm when I went up I knew which NS I was going to see....I went for a 2 day event.,...more testing the first day...and then a day of appointments the next.
I was even sent to the floor above TCI to get the urodynamis testing done....I have TCS too and they needed to see how that was affecting me and which they had to treat first.

Well to date, I have not been able to get to the EDS specialist...she is out of state, and many events and issues that have prevented this....

I do try and avoid things I know will cause a problem for me.....EDS can cause HA's much like Chiari, so can the TCS....
Once u learn how these conditions affect u , it is easier to not have it affect u to the point of needing meds....the hardest is to get family to understand how u have to do things....slowly in moderation ...for example Christmas if I start at Thanksgiving, slowly layering is better then waiting and trying to do it all at once.

[dimples0925]

Thanks Selma! Not sure about the NS, I was told I would see NP for about an hour and Dr Kula for 1-2hrs....no mention of NS. He ordered flexion/extension mri that the girl doing mri didnt know how to do and called Kulas office to ask while I was with her. That mri showed the joint spurring, lordosis and foraminal narrowing. So all my tests so far were csf flow study.... brain, cervical, thoracic mri and cervical in flexion/extension mri.

What has been done for you in the way of handling your EDS?

[selmaS]

  Hi Congratulations!! Dr Kula is a very nice man...he will talk to u about posture and he is right, just may not be something u expect to hear...lol....

What testing is he having u do b4 u go?

Which NS did they assign to u?

I had testing I had to get done b4 going as well....

Not sure I can tell u much except the chairs in the waiting cubical r pretty, but not comfy and u spend a lot of time in them...there r TV's and cookies and coffee  to nibble and my DH found a nice deli across the street...it was a long day as I sat and waited to see the NP first, then back to the cubicle then to see Dr K....than back to the cubicle, then in to see the NS....it was all in stages....so it depends if u will see the others as well as Dr K how ur day will go.

They will have u walk around the office to look at gait, and use a pin to see if u can feel it on ur foot etc...typical neuro testing....I was also checked for EDS with the NP....they check everything.

EDS can cause disks to shift, and joint pains....so u may have this.....

Good Luck

[dimples0925]

Also, I am showing major arthritis symptoms in my hips and knees. My hips keep me awake much of the night. Could there be a condition causing all the DDD in my back as well as hips and knees? Saw physical therapist for little while that found I only had 15% range of motion in my hips. I really don't feel 34 nowadays, its so frustrating!