arnold chairi malformation and syringomyelia

Posted by lauraboyd to Disease/Illness, Mar 18, 2010 11:00am

these r birth defects where your brain falls outta the back of your skull down into your spinal canal and that causes the next problem that is a syrinx that detereates the spinal cord from the inside out these r b defects that alot of times dont show up until mid life mostly n women but not always also go undetected for many years mine went miss diagnosed for 10 yr for several dif reasons these r rare defects with alot of dif sytoms all over yr body doctors dont no much about this diease there for dont really check for it very lil research is done on this condition and there is no cure for them if u have one defect u most likly have the other and also these can also run n yr family i have had 2 surgeries for my condition 1st one almost half of back of skull was removed and replaced with dura patch and removal of part of top vertabrae this is 2 improve flow of csf 2nd surgery was 2 stop csf leakage i was told this is all that can b done for this problem the neurosurgean that i had didnt inform me of much of anything about my condition wat was gonna happen durin or after surgery if we learned anything about wat was happenin 2 me we were askin pin point questions and he would shortly answer and say you r very full of questions needless 2 say he did not care bout me or my quality of life for 6 months or so he let me stay n complete pain and sickness told me he would not give me anymore help than he alredy was he would send me 2 another dr i waitde and waited he done nothing finially my pcp got me reffered 2 pain management dr this dr is supposed 2 help me and i jus keep praying wat i have learned about these conditions i learned threw the internet i was a tipical wife and mother of 2 with a job and constantly running from 6am to 10pm i am now reduced to the bed the couch and the house people and drs should no more about these conditions more research could really help oh i look just fine u would never no that i was sick if u didnt live with me people r trained 2 see sickness with thier eyes and if u dont look sick u must not b sick thats jus not true caz the pain from this has stopped me n my tracks and totally affected my whole family