My four year old was decompressed when he was one year old. He is having severe balance issues, so his neurosurgeon ordered a MRI and sleep study. The MRI shows scar tissue that is pushed against the cerebellum. He is ordering a flex MRI to see it from another view. He said other surgeons would order surgery right away based on the findings, but he is more conservative. I don’t want to put John through anymore surgery and would love to hear other’s experiences with this.
The sleep study showed epilepsy, so we are meeting with a neurologist in a week. We don’t know which type, but this could be causing the balance problems. He has not slept through the night EVER, so the epilepsy is most likely causing this.
Thanks for the support!
We have an incredible kind Member that is a very experienced Pediatric Neurosurgeon. His name is Dr. Trumble. I am going to send him your message. Adult Chiarians experience different symptoms and side effects than children. I promise we will all be there for you.
Sorry to hear of your issues. Boston presented their data on chiari re-operations in children 2-3 years ago. In their hands, >50% of children operated on at <4 years of age required another operation(thier numbers were not large enough to better quantify by age). This led me to review my patients. 80% of the children in my practice operated on at 2 years of age or younger reequired a re-operation. Some of the reasons are on my web site
WHY IS YOUNGER MORE DIFFICULT?
Size – more difficult to get adequate bony decompression
Bony healing – greater tendency to close openings1
Greater growth – more changes in skull morphology
Associated symptoms – higher incidence of respiratory and lower cranial nerve dysfunction - Leading cause of death2
1 Re-operation for Chiari Malformations Sacco D, Scott RM in Pediatr Neurosurg. 2003 Oct;39(4):171-8.
2 Chiari Type II Malformation: Past, Present, and Future Stevenson KL in Neurosurg Focus 2004 Feb 15;16(2):E5.
What you are seeing pressing on the cerebellum is most likely regrown skull(best seen on a CT, one of the few times you want a CT as well as an MRI, to check for bony regrowth).
It certainly makes sense to makes sure you aren't dealing with more than 1 diagnosis(epilepsy and Chiari) but most patients do end up requiring a second procedure if they remain as symptoamtic as you describe your son. Fortunately, he is now old enough that the next Chiari operation should be his last.
Dear Dr. Trumble
Thank you very much for responding. I really appreciate the information. We will be getting another opinion now. I did not consider the bone growing back. I am going to request a CT as well. Thanks again.