Re: more ??? Re: Intro newly diagnosed and Michigan Docs

[Guest guest]

Hi this is a reply for Patti - I get emails from this list rather than

seeing the original posting, so this is the only way I can reply

I have/had thickened filum and arachnoid adhesions, as well as a split

vertebrae at S1/S2 and had detethering surgery in 2001. I wrote a website

about it, so please do go to have a read and see how a TF detethering gets

on!

Now I am coming up to 7 years post-op and the tethering syndrome is the

least of my problems. I have more issues with the conditions produced by

the tethering - ie deformed feet and lower legs which is compromising my

ability to walk. I have occasional pain flare-ups but they are manageable

and no way as bad as pre-op.

best Wishes

Nina,

Bristol, UK

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

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> Hi Patti,

>

> I was asymptomatic my entire life and took a fall down the stairs at age

> 44 (what is about being 44!) and a few days later started having numbness

> and tingling in the bottoms of my feet. As the months went on I have back

> pain, numbness/tinglings in my legs. I had a lumbar MRI that showed a

> tethered spinal cord with diastematomyelia , but it wasn't until I had

> bladder issues that really concerned my NSG and me. I ended having

> surgery, because my symptoms were progressing very quickly and I wanted

> to perserve as much function as possible and if I got back anything I had

> lost that would be extra. For me, it was the right decision

>

> The surgery was 3 1/2 years ago and I'm experiencing more issues now, but

> my MRIs don't show a re-tethering, but the NSG said it could be. We both

> agree that we would positive proof before I would ever consider more

> surgery, but I still feel I made the right decision the first time. Do

> your best to find the right doctors, you gut will let you know when you

> find the right one. I'm lucky I work with a good team of doctors,

> physical therapist and pain management specialist and they are helping me

> a lot.

>

> Nobody knows what the future will hold. You will make the decision that

> is right for you with the help of your doctors and family. I wish you all

> the best.

> Jane

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> more ??? Re: Intro newly diagnosed and Michigan Docs

>

> Are there adult TCS patients who DON'T have surgery that find

> relief? How? Is TCS usually a lifelong struggle with surgeries and

> pain management? Does it usually progress or can it go away? I've

> only seen that surgery is suggested/necessary from all the online

> info. The CT, MRI's show my thickened fatty filum terminale/low

> lying conus L3, but because I have never shown other symptoms before

> this year (44), the NS said he wants to rule out/explore other

> options with Uro and Rehab specialist before commiting to surgery.

> Thanks for answering my posts and many questions!

> Patti

>

>> > >

>> > > Does anyone know of any good NS in the Detroit area? I am in

>> need of

>> > a 2nd opinion on my 2nd CSF leak.

>> > > - S.

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