Spina Bifida and Tethered Cord

[dmweez]

I am a 37 year old female with spina bifida and a tethered cord.I only found this out 2 years ago and they did surgery.I had a L2-S1 laminectomy and drainage of a syrinx within a split-hemi cord.The tether extended well down to the sacrum and neural tissue throughout the tether.They were only able to do a partial release of the tether unfortunately because of my anatomy.The only thing the surgery did for me was stop my urinary tract infections.I cant walk for more than 10 min (legs become very heavy and then the pain sets in)its like my head tells me one thing but my legs wont listen.As I am typing this my lower back and bum has a lot of pressure and pain and my arms are starting to get the pins and needles.My collar bone hurts and my upper back burns.When I do move around on my feet the back of my left ankle hurts and the bottom.My knees also hurt but they told me that was arthritis.It seems that everything is pulling away from me and periodically feel tearing in my back where they did the surgery and the top of my bum feels like I am sitting on a rock or something.They told me I have an overactive bladder and I have to take softeners every night to have a small bowel movement.The second neurologist I seen recently is sending me to a spine specialist because my pain control is so poor and I just feel like I am deteriating a little more each day.He hopes that the spine specialist can help me but if not they were going to look into a stimulator .I am very scared and wish they would of found this out many years ago.Am I just going to keep getting worse?Thanks dmweez.

[CCF-Neuro-M.D.-CS]

Unfortunately without seeing you and reviewing your films, I will not be of much help. I would recommend having a second opinion at a large academic spine center, such as the one at the Cleveland Clinic. You may have to travel, but this may be worth it in the long run. At a large academic center they will be able to make sure that you see the appropriate specialists to obtain the best advice. Good luck.

[debbes01]

Hi,
I am your age and also have spina bifida and a tethered cord.
except my neuro-surgeon did not recommend surgery to fix
my tethered cord. he said in many cases, it could make things
worse, so I opted not to get it.
I have knee pains all the time, and think it is from that,
although I too have been told it could be from arthitis.
i have one advice that always worked great for me, swimming at a heated pool. swimming decreased my pain a lot AND made my muscles stronger and so I didn't get as achy.
even if you can't swim, if you could just walk back and forth in the pool and swing your arms around, it really helps.
too much walking is not good for our knees, so my Doctor recommended the stationary bike, i've just started that and it hasn't affected my knee pain either way.
Another thing I have learned is not to stay in one position too long, like sitting at the computer without a break.
i am lucky to be doing as good as I am with my problem but I
owe it all to my neuro surgeon, Dr. Cliff Cannon in Savannah Georgia. he is the best! I don't know where you are, but if you are anywhere near, he is a great Doctor.
please e-mail me anytime, I would love to keep in touch.
I am debbes01 on aol.
Hope everything works out for you.
Debbe

[Boles]

This is in response to those people who have had the surgery for a tethered spinal cord. I am 41 and had the surgery done 8 years ago. Prior to the surgery, I never had back pain, but had the heaviness, numbness and pain in my legs (mostly my left leg). I have tried every medication for both problems and finally, after 8 years, I am currently on something that helps my legs "Lamictal" prescribed by a Pain Mgmt Doctor. It took about 3 weeks to kick in, but is working and walking is no longer a problem. The drug is usually prescribed for Bi-Polar and can have some serious side-effects - apart from making me a litte tired, its working and I'm very grateful! I am still on Baclofen for leg spasms at night and it is also helping.

After 8 years of low back pain that almost wore me down, my Neurlogist suggested that the source may be my Sacroiliac Joint. I am scheduled for a cortisone injection next week and am hopeful that it will work!

I hope that the above information may be of a little help to someone out there!

[Boles]

This is in response to those people who have had the surgery for a tethered spinal cord. I am 41 and had the surgery done 8 years ago. Prior to the surgery, I never had back pain, but had the heaviness, numbness and pain in my legs (mostly my left leg). I have tried every medication for both problems and finally, after 8 years, I am currently on something that helps my legs "Lamictal" prescribed by a Pain Mgmt Doctor. It took about 3 weeks to kick in, but is working and walking is no longer a problem. The drug is usually prescribed for Bi-Polar and can have some serious side-effects - apart from making me a litte tired, its working and I'm very grateful! I am still on Baclofen for leg spasms at night and it is also helping.

After 8 years of low back pain that almost wore me down, my Neurlogist suggested that the source may be my Sacroiliac Joint. I am scheduled for a cortisone injection next week and am hopeful that it will work!

I hope that the above information may be of a little help to someone out there!