Hi I'm new and awaiting tethered cord surgery...

[Guest guest]

Hi all,

My name is Francine and I live in Quebec, Canada in a rural little

town. I am 46 years old. Here is my story.

Since birth, I have always thought myself to be a healthy and strong

person. The only physical problem I had as a child is that I just

could not take control over my bladder. I wet my bed almost every

night up until I was about 13 years old. My parents had always

thought that this was stress-related and even more a lack of will or

control. Up until the 6th grade, I also frequently had «urine leak

accidents» in school, which has been the most humiliating thing in

my life. Anyways, I finally took control of my bladder when I turned

13 years old and have never had any other problem (except for

constipation) up until 1999 (I was then 43 years old). In 1999, I

started having urgency, frequency and incontinence again. I

consulted with 2 urologists who diagnosed me with IC (interstitial

cystitis, a painful bladder condition).

It was not until last year that I started complaining of severe

lower back pains, accompanied by weekness in my right foot, knee and

thigh. My treating physician then ordered an X-ray of the lower

spine. It was then that she discovered that I had Occult Spinal

Dispharism (spelling ??) meaning that the last 5 vertebrae had an

open spina-bifida. I next had a CT scan followed by a MRI which was

done this year before Christmas. Following this MRI, the technician

ordered me back to have another done. It seems that I have a

thickened filum terminal, a fatty lipoma and a tethered cord from L1

to L5.

Since then, I have consulted with 3 neuro-surgeons who all have

advised me to have surgery as soon as possible. I did not agree to

this until last week when I last consulted with a pediatric

neuro-surgeon who seems very knowledgeable in these particular

cases. This surgeon says that I must have that cord untethered as

soon as possible in order to stop the degenerescence in my leg. He

also told me that the surgery will surely help a great deal with the

pains. But he also told me that he thinks I will not be able to

regain complete control of my bladder function.

Does all this sound familiar to some of you? Before last Fall, I did

not even knew what a tethered cord was and I was not even aware of

the congenital spina-bifida. I simply thought that I had the

Spina-Bifida Occulta for which everyone had told me that it was not

the cause of all my problems.

I am now awaiting my place to have this surgery possibly next week

or the week after. My neuro-surgeon has also advised me that

following surgery, I will have to stay button-up for at least 3

whole days to make sure that there is no leaking of the dural fluid.

Is that really necessary? And if so, is it very painful? As you can

see, I have very limited knowledge about all this and I need all the

help I can find.

I am so glad that I finally found a Yahoo group for tethered spinal

cord and I look forward to talking with you all. Usually I try to

make my posts as short as possible, so I apologize for this long

post. But I thought that if someone wants to give me some

information, I had to give you at least a summary of my personal

case.

As I said, I look forward to meeting you all. I'm glad to be part of

this group. I have read about 10 posts on your group and you seem

all to be a bunch of really nice and caring persons.

I hope you all have a nice day!

Francine R.

e-mail: franciner@...