Introduction

October 17, 2007

I will keep you in my thoughts and prayers. Hugs Beth

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February 7, 2008

Hello everyone, my name is . I am 44 and live in OK. Thank goodness for

sites like this, I am very discouraged today. I had undiagnosed TCS for 37

years. Went from working to being in a wheelchair within two weeks after a chiro

visit (had seen chiros my whole life for back pain). 2 Orthos said I needed L5

disc surgery, they tried a steroid injection which I had a Violent reaction to.

Went to a neurosurgeon to do my disc surgery and he picked up on the TCS. Had a

release without complications except a leak because the nurses didn't know how

to handle me post op. I was back to work before I knew it and life was good.

First time in my memory of no back pain. Six months later I slipped and fell at

work and had back pain again but nothing like what it was before surgery. Fast

forward to 2005, I fell from my horse right on my surgical site, HARD. Fractured

the sacrum and coccyx (juts forward). Since then I have had excrutiating

constant burning nerve

pain at the coccyx, sacral and hip pain. Radiation down Rt. leg to foot. Wierd

sensations like " water running down my leg " " skin hurts to touch " sometimes.

They tried narcotics but nothing helped finally got on Cymbalta which was

helping a little. Then a month ago my pain level went up, radiation down both

legs now, fecal incontinence x 2 but I am unable to have a bm normally. Up until

2 days ago, I was having to wait for rectum to fill and then push up on that

area with my hand to kind of force it out. Night before last I was hurting so

bad, I couldnt even stand the pressure of my bones in my body (sounds wierd

huh?) So I took a 10mg Flexeril to knock me out. Yesterday nothing came into the

rectum, today nothing again (I am eating, drinking, very high fiber etc) so I

finally had to do a colonic to evacuate because I felt like I was going to

explode. Sphincters are extremely tight, even though I was " relaxed " . Had an

L-spine MRI w/contrast 2 weeks ago

which showed no retethering, no arachnoiditis. But this week has been HELL. Had

my neurosurgeon read also, he concurred. Neuro says that my reflexes are

indicative of an upper motor neuron lesion ie MS or brain tumor. I am not

" feelin " the MS, this all occurred after an injury. As for brain tumor, wouldn't

I have vision probs or severe headaches or something?? I have had two episodes

of headache which landed me in the hospital but they were about 8 & 2 years ago.

They thought I was stroking but never found anything. I asked my neurosurgeon if

the clonus (ankle) could be caused by concussion to the spinal cord when I fell,

he said yes. I wondered if I was deteriorating because my coccyx continues to

sheer back and forth through a nerve bundle where it sits but I spoke with a doc

who has done hundreds of coccygectomies and he said no. I definately have

" cycles " of pain whether I overdo it or just get out of bed, can never tell what

will set it off. So,

now 4 docs have told me to have a brain scan...I cant work, have no

insurance...not sure I believe that I dont have arachnoiditis so after this bad

week following the other MRI, I am very hesitant to let them put anything in my

body. I am going to research brain lesion symptoms some more. My surgeon never

really talked to me about TCS much, only that I needed surgery and all would be

well. From the posts I have read it seems that TCS affects you long after

surgery (I need to read a bunch more) My GP gave me a medrol dose pack to take

for a week before the brain scan to prevent an inflammatory response so...Maybe

I should rack up a few more thousand dollars in bills, what the heck? Do all of

my symptoms (including clonus) correlate with TCS?? Well, time to lay down...all

comments appreciated.

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February 7, 2008

Hi, Clement Have you looked into Chiari

malformation? Also, EDS (Ehlers Danlos Syndrome) Just curious...

Clement wrote: Hello everyone,

my name is . I am 44 and live in OK. Thank goodness for sites like

this, I am very discouraged today. I had undiagnosed TCS for 37 years. Went from

working to being in a wheelchair within two weeks after a chiro visit (had seen

chiros my whole life for back pain). 2 Orthos said I needed L5 disc surgery,

they tried a steroid injection which I had a Violent reaction to. Went to a

neurosurgeon to do my disc surgery and he picked up on the TCS. Had a release

without complications except a leak because the nurses didn't know how to handle

me post op. I was back to work before I knew it and life was good. First time in

my memory of no back pain. Six months later I slipped and fell at work and had

back pain again but nothing like what it was before surgery. Fast forward to

2005, I fell from my horse right on my surgical site, HARD. Fractured the sacrum

and coccyx (juts forward). Since then I

have had excrutiating constant burning nerve