tethered spinal cord

I was born with a tethered spinal cord (no other spine issues- spinabifida, chiari, etc.) and my onset of pain was around 18 years old.  I am now 34.  The pain in lower back, hips, and legs has been unbearable for the past six months.  Much worse than before.  I cannot sleep with out taking baclofen, and even that doesn't always work.  The pain prevents me from sleeping and wakes me if I am sleeping.  My bladder isn't perfect but it isn't that bad.  My bowels function normally.  how do I know when it's time to have the surgery?  

[selmaS]

Hi I too have tethered cord....I do however have chiari, mild scoliosis and DDD...and stinosis.

I have had bladder issues for yrs and bowel problems..written off as IBS for many yrs but I know believe it is the TC.

I invite u to join the chiari forum as it is for related conditions as well. Our helath pages have info and we do help in locating drs that can help.Chiari drs r the best for ne condition considered related.

It is best to sleep on my side with several pillows...and I keep my legs bent.

IMHO I suggest u get an exam by a specialist in this field.My pain has cycelled over the yrs and when I was young I was told it was growing pains...I could barely walk or take gym class.

Right now I am waiting for a call for an eval at the chiari institute in NYC.....regular NS's do not know enuff about these issues.

I hope u will consider to join the chiari forum .

"selma"

[abhijeet v ghosh]

hello court2,
with so many problems, don't you think you should meet a neurosurgeon and decide about the operation?
regards
abhijeet.
keep us posted.

[court2]

I should have stated that I have seen a neurosurgeon.  I haven't seen her since June when she said my condition is on the mild side.  I am scheduled to see her again soon since my pain has gotten so much worse.

thanks

[court2]

thank you for the info.  This is the first time I've been on one of these sites.  I will definetly check out the chiari forums.  I'm also interested in the Chiari institute.  Let me know how you make out there.  Have you had the cord release surgery?  It's hard to weigh the pro's and con's.  Also, I don't want wait until my bladder and bowels are shot.  Was your chiari detected on an MRI?

regards
court2