Guest guest Posted September 4, 2007 Report Share Posted September 4, 2007 Hi, everyone. I just found your group through the Wikipedia article on Chiari. I have a 14yo son who was diagnosed with spinal compression due to basilar invagination and basilar impression 2 years ago. He has had two surgeries: the first was laminectomy removing the back part of C1 and fusing C3 to the back of his skull. The second was transoral odontoidectomy through the back of the mouth. There is now nothing pressing on his spinal cord/brain stem, but the cord still has a dented look from long compression and probably will not go back to its former shape. As far as symptoms go, he has recovered much since the surgeries, but he still has trouble with balance and coordination,has neuropathic pain in his feet, and the tips of his fingers are numb. He takes 800 mg of Neurontin 3x a day. He has trouble with tiredness and muscle weakness. Walking for 10 minutes/around the block is a big deal for him. It is nice to find a group of people who have dealt with similar problems, since my husband and I don't know anyone who has. Who ever heard of basilar invagination? Even our PT said, " maybe you guys need a support group " , but then he couldn't think of one that fit us. Oh, speaking of PT, we have a PT, a certified hand therapist, and an OT who specializes in Sensory Integration, balance, etc. Now we're looking at Speech/Language Therapy too because testing showed he has auditory processing problems. Whew! Well, glad to be here. Think I'll just watch for a while. Yours, CSP Quote Link to comment Share on other sites More sharing options...
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