Guest guest Posted May 17, 2004 Report Share Posted May 17, 2004 cloud dancer, hi Larry here, i think i speak for alot of people out here when i say your story has touched alot of people around the globe. talk later....Larry Has CES non-operable > Hi, I'm cloud, I'm a 42 yr old mom to 4 . I was diagnoised last summer > with CES , it roots from a birth defect in my lower spine so surgery > wasn't an option for me. I live in constant Chronic Pain. My legs - > the muscles - knot up, spasm , jerk whether I'm walking or not , its a > constant thing when I sit or sleep , I also have coccyx pain - > malformed tailbone - not sure if its all birth related or from > numerous falls although several fractures were seen on the coccyx . > > I was born with the floppy doll/rag doll syndrome , dr's couldn't tell > my parents any thing - they came up with all sorts of stuff that > really didn't fit the problem. at 2 yrs old I learn to sit on my own > and scoot on my rear - and waffled my rear on a floor furnace - and > was told I never even cried , I learned to crawl around age 3-4 yrs > old and at 5 yrs old I took my first step. From Age 5-12 ,things > seemed to settle down I was able to learn the typical childhood things > that no one though I'd ever do - ride a bike , rollar skate - although > i did so on 6 wheels and not the 8 . > > At 13 the pain was unbearable, I don't recall what I did to cause it > but it made me drop to the floor - my legs - i felt nothing but the > searing pain . Nothing was done for me and I lived with this - either > going numb from the waist down,peeing on myself to the searing Pain > up til current . Last July - it hit bad and I wanted answers ,so my > husband got me in with a spinalist and he diagnoised me with Cauda > Equina Syndrome . I wanted a 2nd opionion and got with 2 neurologist , > one a surgeon ..both confirmed the CES but the surgeon said from the > MRI , surgery was not recommended ,that my chances for paralizing was > 90% after surgery - but in the end - i will still end up a paralagic. > Its from a birth defect in the lower spine L-1 and Down is affected. > > I take vioxx and ultram for pain and sometimes that's not even enough. > I also take Trazodone for at night . > > Cloud > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2004 Report Share Posted May 17, 2004 Cloud hugs and prayers to you. Joy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2004 Report Share Posted May 17, 2004 Hi Cloud...welcome to the group, but sorry that your condition made us meet. This is a great group with lots of experiences and knowledge. Same days the list is busy, other days they are not. Just depends on how everyone is feeling. Viv in GA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2004 Report Share Posted May 17, 2004 Hi Cloud, My names alisa, nice to meet you. Sorry it has to be under these circustances. You came to the right support group. Everyone in here are very nice and understanding.We all share something in comman.(pain) What a thing to share huh? People who don't have cronic pain don't understand that is why this group is great because we all know what pain is and we support each other, Good luck to you alisa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2004 Report Share Posted May 17, 2004 Thanks for the welcome, and understands well bout list being busy at times, others not , just spent 4 days of being offline due to pain that nothing wanted to phase out, its alot better today. Cloud > Cloud hugs and prayers to you. > > Joy > > > Quote Link to comment Share on other sites More sharing options...
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