All Journal Entries Journals
Previous | Next

Spinal Cysts??

Mar 07, 2008 - 1 comments
Tags:

cysts

,

spina bifida

,

spinal cysts

,

neuro

,

spinal



My two and a half year old daughter has spina bifida.  When initially diagnosed (birth) we were told she was probably around L4-S1 somewhere.  About a year ago, because of her lack of function (she can't even roll over yet...), we were told she's probably got damage in her thorasic region somewhere.  BIG change.  She's had a shunt placed, 1 revision, had back closure at birth, and had a "chiari decompression".  We found out when she was a little over a year that she's missing her cerebellum (they think she probably had a stroke in the womb).  She had a spinal MRI done (first one ever...) in the beginning of Feb and we found out that she has spinal cysts along her spine.  We were told it looks like a strand of pearls (all different sizes) along her spine.  Obviously this isn't spina bifida related, just like the missing cerebellum.  We're suppose to have some follow up tests run within the next couple weeks to try and figure out what's going on.  They're going to inject some dye into her shunt resevoir so they can get some better pics of her spinal fluid when they do the CT scans.  I'm VERY anxious and nevous about this.  Not the tests, but just what's going on in general.  I can't find anything online about spinal cysts and we don't have enought information right now to really google what type of cysts they are or anything like that.  Can anyone with some medical background help me speculate what's going on?  Please?  I'm going crazy not knowing possibly what these are and if they're adversely affecting my daughter.  Of course we've been through quite a bit in her short life thus far and are not worried about possibly having more surgeries (it's going to happen often in her life...6 so far in only 2 years...), I just hate not knowing some answers when I know there's questions about what they saw in her spinal MRI.  Help please?

Also, anyone who wants to talk spina bifida please reply!  I love discussing it.

Comments
Post a Comment
408291_tn?1238236611
by twinkle36, Sep 21, 2008
Hi there, I've just read your comment about spina bifida spinal cysts.  I dont unfortunately have any news on the spinal cysts, but I do have spina bifida.  I'm 47 married and the mother of a beautiful daughter who is almost 17 and was born perfect.  My mum used to tell me that she wished she was 40 (from about the age of 27) so that she could see how I would turn out, and if I would survive.  I had my first surgery at just 13 days old to close my spine, and I have had regular surgery since.  But in most aspects I lead an ordinary life.  I was working part time teaching adults up until about 18 months ago, but gave up due to it becoming too much for me.  My mum was told that I would be 'a cabbage' and there was no hope of me living, so they put off my life saving surgery for 13 days.  Durning this time my mum refused to be discharged from the hospital unless they did the surgery on my spine.  After a stand off they did the surgery and I have made a remarkable recovery.  I still have to use a stick, sometimes two but I have kept out of a wheelchair and hope to stay out for as long as possible.  I'm sure that your daughter will also have the same fighting spirit as I had/have and will flourish.  I feel for you, but hope I have helped a little.  God bless x

Post a Comment