Spina Bifida with tethered cord

[sshirey]

My niece has just undergone he 14th surgery inthe last 5 years to unteather her cord. After each surgery she has to have an additional surgery within 5 days due to spinal fluid leakage. She is 21 years old, is there any in formation or help for her from the scar tissue which keeps causing this problem? How long does it take to replenish spinal fluid and can youhave too much or too little spinal fluid? Any help would be greatly appreciated. We are in the Detroit, Michigan area if anyone knows of support groups.

[selmaS]

Hi and welcome to the chiari forum.

May I ask does ur niece have a bag for eliminations?

Does she walk with braces....and have scoliosis as well?

As Ray has mentioned it is good to know what type of SB she has and what limitations have been dealt with ....and to know if other related conditions r ruled out.

Tethered cord is one of those surgeries unfortunately that may need to keep being redone as the surgery to release it can cause it to re tether bcuz of the scar tissue.

Do u know if she was checked for Ehlers-Danlos syndrome?.....

As for the leaks, the best thing would be right after surgery to lie flat and drink plenty of h2o and caffeine...it helps the leaks seal them selves...if that does not work, a bloodpatch can be used to seal it....surgery to correct this is a last option.

I hope this is helpful

"selma"

[shanmomof3]

Hi sharon and welcome to the group! I'm SO sorry she has had to go through all that!  I dont much about SB either but i wanted to welcome you and let you know that this is a place where you can learn, rant, or just get a "hug" when you need one. Blessings to your family. Shannon

[rod44]

Hi Sharon, you are welcome. Do you know what categorie of Spina Bifida your niece has.
Ray

[sshirey]

Thanks for the encouragement. I too don't know all there is to know about Spina Bifida, but I am curious and would like to help her if I can.
Thanks
sharon

[rod44]

Hi and welcome to the Chiari Community....
Sorry your Niece is having so many problems....
I don't know much about Spina Bifida.
There are other SB issues that you need to be aware of such as Syringomyelia (due to CSF obstruction), split cord malformation that need to be ruled out as they can lead to cord compression making things more complicated

Yes you can have excess fluid and this can lead to hydrocephalus or "Water on the brain"

Hope this helps

Ray