Re: a/Anyone doing the wait and see approach?

[Guest guest]

Hello a,

Yes we do have similar stories, I was always at the gym bodybuilding or doing

any kind of exercise not knowing I had a TSC, I was always aware that I had a

lump over the base of my spine but didn't know what that was I just thought that

was the way my bones were shaped, one doctor called it a fat pad and that was

it...

Now I can't barely do anything that involves exercize for some reason it makes

the pains in my legs worst but tolerable, I still want to do my everyday stuff

but I'm dragging myself, I did lose lots of interest in the things that I love

to do because of the pain, but I will never have surgery, I'm not bad enough to

say that I would give up what I can do to risk any serious complications from

surgery, at this point in my life I don't want to be recouperting from surgery I

want to enjoy that I can walk and still do things, the doctor did put me on

medication for the pains in my legs which does help.....thanks for sharing yur

experiences....

Sharon

________________________________

To: tetheredspinalcord

Sent: Wed, June 2, 2010 9:49:26 PM

Subject: Re: Anyone doing the " wait and see " approach?

 

Hi Sharon,

We have similiar TSC histories. I was diagnosed in my 40's. Had a history of

severe constipation and pain -- like a charlie horse -- in my lumbar area right

at the fatty lump.

At 50 my pain and leg weakness suddenly got worse. It was hard to walk, climb

stairs and so on. This came on so fast -- I went from jogging, lifting weights,

and doin step arobics, working full time, and taking care of my home and large

family to dragging myself into work then back home to collapse on the couch in

less than a month's time.

So I had the detethering. The surgery did exactly what the doctor said it would

no more no less. The acute changes were reversed and the chronic symptoms

remained. Then two years post surgery there was another decline, then another,

and again. I am not a candidate for

surgery (not that I would have the surgery again) because my doctors have said

they do not do the surgery to manage pain only loss of function. And I am to

high a risk for the surgery hurting more than it helps. I have a syrinx as well

as the TSC. And my cord split into two cords -- which means there is even less

space -- I don't really understand TSC as some others in the group. I guess I

just don't want to think about it.

Anyway I hope my story is helpful,

a

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> > I'm 55 with very little symptoms went thru my whole life not knowing that I

had TSC until recently found the TSC by accident thru MRI...

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> > ________________________________

> > From: kyra_baker <kyra_baker@>

> > To: tetheredspinalcord

> > Sent: Tue, June 1, 2010 2:09:59 PM

> > Subject: Anyone doing the " wait and see " approach?

> >

> >  

> > Hi everyone,

> >

> > I am the mommy of a precious 2 1/2 year old adopted from China. She was

diagnosed with TC on an MRI. She is asymptomatic and NSG wants to monitor her

growth and development and remain conservative. She has completed the full

urological tests and they are normal. She is potty trained. I am trying to be

patient with the " wait and see " approach but frankly, it can be scary. I would

never want her to begin symptoms that were irreversible before doing something.

On the contrary, I don't want to subject her to a surgery that might cause

problems that were not there before. I would like several opinions from NSG in

the Charlotte, NC area if anyone could recommend names to me.

> >

> > Blessings,

> >

> > Kyra

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