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Spinal Cord Disorders Message Board

Spinal Cord Disorders Board Index

Hello Everyone,

I am new to this board. I have a daughter with a Lipomyelomeningocele and was searching the web for a message board for her when I came across this one. I was reading some of the messages and saw one regarding the same diagnosis as my son. He is only 14 and was diagnosed a year and a half ago. He is in pain everyday. Not too bad if he doesn't do anything, but he is very limited with regard to his activities. We homeschool which is a blessing, because he would have to be home tutored by the school if we didn't ( have heard this is not so great) Believe it or not (I am sure you will) He is still being "ping ponged" around as he calls it from doctor to doctor. They are not seeing the full picture of this condition because he is so young and just don't get the restrictions he has. He describes two types of pain in his back. (a bone pain and a muscle pain) He now can not sleep on his sides because of pain and also we just discovered that he has a pinched nerve from the slip in the vertebra. He does not experience any pain in his legs, just different sensation in the lower legs vs the upper legs. Also his reflexes are not good in his ankles. He says he "falls off them at times when running/walking fast. Anyone heard of this? He did have 2 diagnostic facet joint blocks and they destroyed the nerve that leads to the facet joint with radiofrequency, but the nerve must have regenerated already. We are going to see a Dr. Budway at NJ Presb. Hos. again next month, but he did not want to do surgery on my son because of his young age. Moistly heat and laying down for a while is the only thing that helps eliminate the pain. The pain is not terrible, but it is chronic and for a 14 yr old boy, it stinks! Oh...they are finally going to send us to a Ped. orthopedist I think. It is like pulling teeth to get these HMO doctors to really care and help us! If there is anyone out there with this type of condition I would love to hear from you. I know with all of my heart that God has a plan for my son, but it is a frustrating road at times. Thanks for listening!

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