Tehtered Chord, numbness, pain, loss of function

[Kelly167]

I was born with spina bifida, and had a surgery after birth. Noticed a numbness in my leg and had a tethered chord repair surgery at age 14. After the surgery i lost more feeling in my left leg, some in my right leg, whole buttox is numb, and vaginal area is totally numb. I lost control of bladder and I have to self cath. At age 17 I noticed an increase of numbness in my lower body, and went back to the doctor. They said it would be better not to have another surgery since it could do more damage. I'm 19 now and there is a huge patch of numbness and painfull tingling in my right leg. I wanted to know if numbness more than doubling from a tehtered chord surgery is normal. Will I become paralyzed if it is tethered again? Will the numbness ever stop increasing? Will I ever get any feeling back? Will I start to decrease in my walking ability? Please help the doctors don't tell me anything and I am extremely scared.

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

Very sorry to hear about your symptoms. I'm not sure anyone can truly predict your neurologic course as the prognosis is different for the various clinical syndromes associated with a tethered cord - some better than others. THe most common type is the progressive cauda equina syndrome, which is sometimes only limited to bladder/bowel dysfunction and does not include weakness/paralysis. And then there are some that are just limited to weakness without any other symptoms.

As for surgery: Depending on exactly what the cord malformation is, surgery to untether the cord may or may not help . For example, it is felt that diastematomyelia (double cord) has a better outcome with surgery. I can understand how it may be difficult to reach out to your doctors, but you really need to sit down with your neurologist and talk about your concerns to help you get a better understanding of your condition. It may also be helpful to have your parents or family with you to discuss things with your physicians so that everyone is on the same page. Best of luck.

[ruznak]

who have you seen for the tethered cord?

[ruznak]

who at the  cleveland clinic is a specialist in tethered cord?

[squeeky472]

Hi Kelly:

  If your getting a lot of tingling, I would almost assume that the feeling is working on coming back, rather than going way, Back in 1990 during the summer, I went in to Boston Hospital for a Bladder Augementation which to make it short was about an 18hr surgery, after the surgery 5 days later the feeling in my legs wasn't there, when it started to come back later on in my senior year of high school thats how I felt, I was getting spazems, and tingling. It was letting me know that something was going on, not going way more. I also has Spine tethering of my cord as well, but mine was much different, after the surgery I ended up with a Spinal FLuid leak, because my neurosurgeon refused to believe I was in soo much pain, and sent me home 2 days after my surgery. When I got home, I couldn't do anything, I was home for a week, and I had my parents lifting me and moving me(I also have Spina bifida too) it took about a month for them to realize while in Rehab for therapy that I had a spinal fluid leak, and not constipation as what everyone kept telling me. But for me after that things just got even worse, I had pneumonia, and mengitis as well, where they removed my shunt in my head. Since then I stil have small headaches only when I laugh, but my lower back is causing a lot of problems, I'm still in a lot of pain in my lumbar area, where the surgery was, so much so I'm on Dilaudid and I take about 7 tablets every 4 to 6 hrs for the pain, but lately that doesn't work, I have noiced thou that lately Sinus Medication seems to help, but my doctor doesn't see why that would be.. all I know is that I've been homebound for 3 years because of this, before it, I could fuction, and move around a lot easier, now I'm lucky if I can transfer out of my wheelchair into my bed, I used to be able to take a shower, and wash my hair without help. Now I can't. Well, if you have any luck, with your problem, email me.. I'd love to hear about it. ***@****
Kymberlee

[gan1982]

A related discussion, tethered spine was started.