Back Downhill

[Littlecrow57]

Some of you know me as the girl who had chiari decompression surgery in March of 2010 and that plays football for her high school "boys" teams. I have not been on her in a while, due to things being pretty good. I got my varsity letter for this past football season, even though the coaches would rarely put me in because they said I was "not good enough", so they put in a wide receiver to kick, and we ended up losing sectionals because of two missed short distanced field goals...but anyway...(:
I've started spending a lot more time in the hospital again. This past weekend, I lost a majority of feeling in the left side of my body and just a little in my right. My legs keep losing feeling during any kind of activity. I also have shooting pains all throughout my body. Mostly in my arms and legs, but also in my neck and spine.
I went to my neurosurgeon today that did my decompression surgery, and her reasoning for this was stress. I'm very pissed off. I'm having a really hard time walking and getting around school. And its track season now, and I'm not able to do anything because my body is too weak. I have a strong feeling that this is Chairi related, because I had some numbness before my surgery...not this bad...and the main reason for the surgery was because they were afraid I was going to become paralyzed. It went away for a while after my surgery, but now it's back and worse than ever. They told me I need to go to a psychologist (bull) and are referring me to a doctor to see if I have Fibromyalgia. I'm very upset.
Advice please?

[linnielou232]

I feel so bad for you and your set back, but like Selma say's your body is trying to tell you something.  I know your flustration as far as going to see a shrink.  I told my doctor when she suggested one that there is no doctor out there that I could talk to other than this forum.  This place has been a blessing for me.  Us with Chairi are not nut's.  I think it is stress related what you are going through, but how I explained it to my doctor was that I could handle pain in the leg, arm etc.  having pain in the head day in and day out consumes us.  She totally agreed. saying she had a headache for a couple of day's so don't know how I deal with it every day.  It is flustraing, but I still have Selma's reasurring word's in my heart that 2 yr post op thing's do get better.  So just listen to your body.  Us with Chairi know our selves pretty well.  I wish you the best, and I'm glad to hear you are getting another MRI maybe you will find some answer's.

[selmaS]

  Ok...I thought so....

  EDS is a connective tissue disorder that many with chiari also get....there are many symptoms and types of EDS...for more info see the videos in the EDS group here on MH by Dr Diana.

http://www.medhelp.org/forums/Ehlers-Danlos-Syndrome/show/417?controller=forums&action=show&id=417&camp=msc

    "selma"

[Littlecrow57]

My last MRI was like 3 weeks ago. They are schedualing one for me soon. What is Ehlers-Danlos?
And yes I was like Penguins57

[selmaS]

  Hi...did u have a diff sign on name b4?.....

I am not sure u will want to hear my thoughts on this...as I do not think playing football and running track at this stage of ur recovery is prudent and ur body is telling u so.

We all heal at diff rates and yes some can go back to a "normal" life but we still have to be careful with the activities we participate in.

From research and from what my NS told me it can take up to 2 yrs for the nerves to heal, u r not at ur 2 yr post op point yet and r having set backs.....

  I can only ask questions....were u tested for Ehlers-Danlos?....a syrinx, tethered cord?When was ur last MRI?

   "selma"