Changes to condition

[Guest guest]

Hi everyone,

I haven't posted for a while, its Cyndy here from Australia. For those of

you who don't know my condition,

I have lipomyelomeningocele with a tethered cord. When I first posted on

the site, I was deciding whether

to detether or not. I was not happy with my NS so I decided not to do

anything. Just over a month ago, I

decided to seek a second opinion. He tested all my reflexes and thoroughly

looked me over. He said that

I had a 30% deficit in my legs and that I would have to do something or lose

the use of my legs. So decision

made, I am having the surgery on May 7th. Things have deteriorated since

seeing this second NS and I am now experiencing

the leg sensations that many of you have described; the numbness and the

tingling sensations. It's like a cold shiver in my legs

at times and I just want my legs to feel normal again. NS is quite confident

of getting a bit of relief in my legs but not to

expect any changes to bladder (currently cathing 3 times a day). The thing

that is scaring me is that over this Easter break

I have been having trouble with my bowels. Usually I am constipated but now

I am getting diarrhoea. Is it usual for a sudden

change like this? I am also freaking out about having to lie completely

flat those first two days... I really feel uncomfortable when I

do this. I know it is necessary but is it as bad as I am imagining? I

really need some support from those who know what I am going

through. I feel like my life is out of control at the moment. Sorry to be

so long winded but I am absolutely terrified.

Regards

Cyndy