Hello there. My son was born with hydrocephalus and chiari malformation but was undiagnosed till he was 3 months old. At his pediatric checkup his pediatrician said that he had increased muscle stiffness. It had been present at former checkups but should have resolved itself. We saw a neurologist the same day and he admitted DS to hospital for testing. The results were moderate hydrocephalus with Arnold chiari malformation I. They placed a VP shunt to drain fluid from the hydrocephalus in hopes that it was the cause for the chiari and would not need further treatment. At the next scan it showed that a decompression would still be necessary but we wanted to hold off till he was a year old to reduce risk. He made it 5 months before the headaches, sundowning and muscle stiffness made the surgery imminent. He had the decompression in nov 2010. Due to the amount of stem (I don’t know the exact measurements) they had to cauterize part of the brain and remove the c1vertabrae removed. He has had several other surgeries since. 2 years ago they found syrinx. He had a shunt placed in his thoracic spine. 9 months later due to scar tissue it had to be replaced. The doctor informed us he may have “weakness” in his feet do to the trauma of trying to remove the tubing with scar tissue buildup. He was lucky and didn’t have such side effects. His latest scans show another syrinx in the C spine area. Next week they will put a tube in it and connect it to the existing shunt.
Welcome to the Chiari support community, Srjames. You and your son certainly have been certainly been through a lot over the years. I’m sure with your experience you will have a lot to contribute to the group. Join in on some conversations and make yourself at home.
We’re glad that you found us, and we hope that you will be too!
Seenie from ModSupport
Poor little guy!!! I hope he recovers fast. All the children I have known to be diagnosed with Chiari’s recovered 100% from their surgeries - so I hope your little one joins that club! One 6-year old girl I knew had been diagnosed with epilepsy - she had seizures since birth. Then, they discovered the seizures where caused by Chiari’s. She had the decompression surgery at the Duke U. pediatric hospitals - and has not had a seizure since. My neurosurgeon told me that the two biggest factors for full recovery (besides a good surgeon) were: 1) early diagnosis, and 2) the younger you are when diagnosed, the better. I hope and pray these two factors are in your favor!
Hi Sam, Wow your son and family have been through a lot. I can’t imagine all the worry and stress you have been through. How is he doing since his last surgery? Tina