NeuroTalk Support Groups

I was very excited to find this sightand hope to find others in our position. My son is now 13. He was born with a myelomeningocoele. It was repaired when he was 10 days old. He developed normally.He walked and potty trained on time. He was thought to be a miracle. Around the age of 8or 9 he began to complain with foot pain it took two years for someone to listen to me. A MRI revealed a tethered cored and small meningocele. He had a second surgery in Dec. of 2005 to correct both. He now has not only lost feeling in the right foot and it is moving up his leg.This is the foot where the pain started before surgery. He now has lost the feeling in his left toes and the side of that fooot. We are told this is from scar tissue and have been advised by two doctors that surgery should now be done without problems with the bladder or bowel.THis is because each surgery produces this scar tissue and the scar tissue will cause other problems. The MRI in the spring of 2006 revealed the cord to be tethered and a small syrinx in the lower cord area. I was never told this by anyone. I read it when I picked up his medical records for a second opinion. I do not know anything about a syrinx but what i am reading does not sound good. If anyone has had these conditions or a syrinx please let me know your story. We are very interested in finding other young people with these same conditions.