Hi Everyone!

[Guest guest]

Hi everybody! My name is Christy and I am 27 years old, and I have

Spina bifida Occulta with TCS. I also suffer with a nuerogenic

bladder and I have bowel issues too! I am married and have two

children. Ages 2 and 7. Both Boys!

Since I am new to the group I thought I would write a little about

my experiencs with TCS. First of all, I was not diagnosed with

anything until 3 years ago. My whole life I thought I was a normal

healthy person! I did have constant bladder infections growing up

and begain to have incontinence around the age of 17, but was never

properly diagonosed. After the birth of my second child I went to

see a urologist upon my OBGYN request. I was having weakness and

numbness in my leggs and lower back pain. I figured it was a

problem with my kidneys. I had never heard of TCS or Spina Bifida

Occulta before, but shortly thereafter I was hearing my neurologist

tell me that I had both.

Since that time I have had numerous tests and MRI's done. I also

have had two tethered cord releases. The first surgery went ok,

recovery was slow, but over all I felt alot better. My legs felt

stronger and I was walking further distances than I was before the

surgery. I still had some pain in both legs and lower back, but it

was not as near as bad as before the surgery.

Then about 8 months after the my first tetherd cord release, all my

symptoms came back abruptly. I knew that something was wrong, and I

feared retethering. All my fears soon became true, when my doc

confirmed that I had retethered, and that another release was

entirely my decision. He said that this time he would use a

synthetic substance to help prevent retethering again, but there are

no guarantees that it would not retether a third time. So I was

faced with a big decision...to have the surgery..or not to have the

surgery. I agonized over it for months and finally decided to give

it another shot and have the surgery. This was a HUGE mistake! I

had so many complications...as soon as I awoke after surgery..I

immediately noticed my right foot felt like it was asleep. It was

tingly, and hurt when the nurse or doctor touched it. Like i was

being stabbed with needles. My doctor had no explanation for me

what so ever..except for give it time and it may go away. About 4

days after the surgery while I was still in the hospital, I had a

CSF leak! This was a horrible experience for me! Everytime I tried

to sit up I felt like my head would explode, and I would get ill and

throw- up. So I had to remain flat on my back..even longer! So my

doc decided just to stitch up the incision from my surgery, another

mistake..I was sent home from the hospital feeling no better! Which

by the way was a 6 hour drive, I live in WV and I had my surgery in

Cleveland. It was not even one whole day that I was home when I

noticed fluid leaking down my back from the lower part of my

incision! This totally freaked me out..because I knew that this

probably meant another surgery. I called my doc, and I was treated

like I was just paranoid, and was instructed to lie flat for three

days, and see if that helps! So after three days and no improvment,

I had to make the trip back to Cleveland, and the next day undergo

another surgery to fix the leak.

I had my surgery in Janurary, and I must say that i feel worse now

than ever! Having the second cord release was a big mistake in my

opinion. The pain is worse. I can barely stand to sit sometimes.

My right foot is still numb, I cant even feel the floor beneath me,

wearing shoes is very umcomfortable, and it is really hard to find a

shoe that will even fit on that foot. There are absolutely no

changes in my bladder or bowel function. I am unable to drive, due

to the foot thing. Walking is very difficult, and if I do too much

I pay for it later.

My neurosurgeon had absolutely no advice to give me, other than if I

retether he would advise against having a thrid surgery. Which does

not bother me any, because I am done with surgery period!! LoL He

has referred me to a Pain specialist by the name of Dr. Stanton

Hicks at the Cleveland Pain Clinic. My appointment is in June, and

I am hoping for some help there.

Meanwhile I cant help but feel like other issues are being ignored.

I am currently looking for a Spina Bifida clinic where I can find

the proper treatmeant and answers to many of my questions. I was

thinking about going to Duke University Hospital. If anyone knows

of a good clinic for spina bifida please let me know. I am willing

to travel as long as it is a car drive.

Well that is pretty much my story..LoL..I am so glad to be a part of

this group and I hope that I can be a benefit to others. I have

learned just about everything I know from the internet, my doctors

have never been very informative. So I know how important groups

like these are to others who have TCS.

Thanks for listening,

Christy