Re: Re: Introduction Newbie

[Guest guest]

I live in the UK and so the neurosurgeon's attitudes may be different. I

had thickened filum tetherine and a split vertebrae at S2, so not as high

as yours, but still had the horrendous pain in the sacrum and especially

when sitting

Why have the surgery: Because with our type of tethering the rates of

success are usually much better than with more complicated types. I would

go through my surgery again if I needed to as it has given me so much back

- I can still walk, drive, swim, lead an independent life - in fact have

just come back from nearly 5 months travelling abroad. The pain is NO WAY

as bad as it was before - in fact it was terrible before the surgery and I

couldn't contemplate a life with that sort of pain. OK, the post-op period

is horrid too, but the pain subsides with our uncomplicated surgeries and

the rate of retethering with our versions of TC is low.

Personally if I were you, I would get the surgery done. You don't want to

leave the problem so long so that your bladder and bowel are affected. They

won't recover 100%, whereas your back and bum/sacrum pain will go down and

you may get some function and a life back without as much pain as you have

now.

Obviously the decision is yours, but the benefits of " simple detether "

surgery are immense

Best wishes

Nina

Have a read of my website on TC at

http://www.btinternet.com/~tetheredcordresources

--

>

>

>

>

> Thanks everyone for your replies. I am so grateful this forum is here

> for us to share experiences and information, dispite what my NS says!

>

> Dee, I have the fatty filum type of tether, not a lipoma.

>

> Here is a part of what my MRI report says: There is a focal

> diastematomyelia of the spinal cord at the T12-L1 level, with two

> distinct hemicords. There is a more normal appearing distal spinal

> cord superiorly and a normal signal conus inferiorly. Small focal

> area of fat in the filum is seen at the L3-L4 level. Conus terminates

> at L1-2. "

>

> And here is what the NS report says.... " Her MRI shows a split cord

> malformation at the conus and a low-riding conus suggestive of

> tethered cord. She is aware that there is a possibility that this

> will not help her pain, but she obviously has symptoms related to her

> tethered cord and that the only treatment option would be to do a

> lysis of the midline septum and cutting of the filium terminale. The

> risks of surgery are quite low and the risk of having to redo the

> surgery is also low. "

>

> At this time I have no bladder or bowel problems. No shooting pains

> down the legs, most of my pain is located in my sacrum. Its extremely

> painful to sit at times.

>

> One of my biggest concerns is that the surgery is not going to help

> the pain. Even the NS makes no guarantee of that. So why do it? But

> also, the NS says if I don't have the surgery I am taking a chance of

> losing control of my bowel and bladder.

>

>

>

>

----------------------

Ms Nina Bunton

Postgraduate Programmes and

Industrial Liaison Officer

Department of Civil Engineering

Room 1.33a, Queens Building

University Walk

Bristol BS8 1TR

Email: nina.bunton@...

Tel: 0

Fax: 0