Pain makes it real. (ps_make_it_hurt) wrote in disabled_teens,
Pain makes it real.

Hi, i'm new.

1.Name: Allison
2.Age: 19
3.Location NJ
4.Disability:  spinabifida, I have full use of right leg weakness in left, i wear a plastic like mid calf leg brace.
5:Hobbies: Music,Art, anything new and intresting



I've just recently, at the age of 19 have started to learn what Meningocele really is, and I've never met or talked to anyone who has it like I do. I have the Meningocele which is the cyst on the back that was repaired at birth and other surgeries as a grew because i also had a tethered spinal cord, no one ive met has ever had Meningocele, tethered cord, and damage to the left leg it's been written about and even my doctors say it's different, I mean thank God i found out what it is, i thought it was a fatty like tumor on my back and I was going to have it lipoid, but then I was talking to my pain management doctor and he explained to me what it really is, so yeah I'm blabbing, I was just wondering if anyone else here has this knows anyone who has it or may know of any books, websites or anything speaking of a case of this nature.

And another thing, Do thertherd spinal cords and Meningocele go hand in hand?

I'm really sorry i'f  i'm coming off ignorant, but all my spinal surgries stoped at age 8 and I wasn't educated enough to ask questions and sometimes even when my mother would ask they didn't have the awensers.
And anyone i've ever seen known or am friends with who have spinabifida are the cases where they are wheelchair bound.


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I have spina bifida too! Wow! Twins! lol
I have been studying my disability since I was old enough to read and understand what I was reading. So if you need to ask anything I will gladly try and help ya out!
heh, What type or level do you have?

I never really studied it because I didn' see myself as being handicaped, I mean it was something I could hide by never taking my shoes off and always wearing pants to hide my brace and even though i had so many surgries because of it, i never took anytime out to think about it.

I've just been hearing from many diffrent doctors say a case like mine is only something they've read about, I have a natural shunt it's a cyst and hold my extra spinal fluid and also have a thetherd spinalcord,and Ive looked at all kinds of websites but never read any thing that has to do with those things, just kids who needs shunts are in wheelchairs and have openings in their backs, sorry i'll stop rambling now
My Spina Bifida is at an L4 level.I am lucky that I can still walk, but one leg is short than the other, due to odd things happening in my hip area. So its hard to hide that I am disabled. Not that I would want to hide it. It's a part of me, it always will be, it will never go away, so why be ashamed of it, or try to make it go away? It's not going away.