I have a 3.5 year old son that underwent surgery to untether his cord for a lipomyelomeningocele he was born with. He was an unsual case where this lipoma in his spinal column grew at an incredible rate from birth to 5 months. It flattened his spinal cord which impacted his bladder and left leg. His bladder was not emptying and his left leg was losing mobility. Fortunately the surgery corrected both problems and he has been doing great so far though there are minor developmental issues with his left leg (less tone and a little less flexibility than his right). However, we were told that there is a 60% chance his cord will re-tether again. My son for the past 4 months has been complaining about left (only) knee pain. Its something that settles down with motrin. Its pretty bad when it happens sending us to the emergency room until we realized motrin helped and not tylenol. X-rays show nothing so it is likely an issue with spinal cord nerves. We were told the first signs of re-tethering for him would be issues with bladder control or left foot turning inward.
He has gone through a growth spurt during this period and I am wondering if that has something to do with it. I am interested in learning what this knee pain could mean or if this is common. Has anyone else dealt with this before?Is it temporary or is it an early sign of trouble? Any thoughts or experiences are welcome!!
HI so sorry ur little guy is going thru all this....yes a cord can re-tether after surgery from scar tissue and a trauma to the area....
May I ask, was ur son checked for syringomyelia or chiari malformation?
I also have tethered cord, have not had it un tethered as of yet....but I did have surgery for chiari.....
And what I have learned from reading on this and related conditions it is so important to have the right drs keeping an eye on this and executing the treatment...
Did ur son have the urodynamics testing to see how his bladder is affected?
The other thing that I wondered about was that mayb the knee pain is due to a autoimmune issue like Ehlers-Danlos....something to look into.
We do have a chiari forum and a few of us do have TC....so if u would like to join us in the forum we would be happy to share what we do know....
Hi Selma - Thank you for your quick response! Yes they have checked him for Chiari malformation (which he does not have) but I do not know about the Syringomelia? He has had regular urodynamics tests as well. I just looked into Ehlers-Danlos and I don't think that maybe it due to only the left knee hurting and no other joints. Now that you mention it the doctor did mention scar tissue being a potential issue in the future. Especially as he grows.
Have you had any particular joint pains or symptoms in a particular location that come and go?
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