Hi my son was diagnosed with Chiari Type ! in 2008. There has been a significant change in his decompression since he was first diagnosed. It has gone from 5% to 20%. He still has no symptoms. We went to meet with the neurosurgeon Dr. Chi today at Women and Brighams. He was unable to get up the films from the MRI and made his decision based on the neurologist's report. Wants to see my son in another year ordered another MRI. Feels he may need surgery eventually but is hesitant to operate because he has no symptoms at this time. Immediately met with son's neurologist Dr. Tyler following meeting with Dr. Chi. Shared with Dr. Tyler what Dr. Chi suggested. He is not in agreement. He wants my son to have another MRI by December and I sense is pushing towards surgery. I am at wits end. My question is there anyone out there who has experienced what my son is experiencing. My feeling is if he has no symptoms then why operate/ UGH
Does he have a syrinx? If so I believe most doctors will lean towards surgery to prevent permanent damage if a syrinx is present.
Having surgery is a very difficult decision. I'm not sure how old your son is. Part of your NL thinking could be that children seem to recover faster and easier so if it did end up needing to be done earlier could be easier on him.
First of all I would be concerned with a Neurosurgeon that bases his judgement on a Report. Having another MRI doesn't guarantee surgery. It is very possible it will give everyone a better idea of what is going on with your son's herniation and if it is causing any CSF flow problem. Your son is not having symptoms & that is very important. Neurosurgeons will not operate on anyone unless they have a large herniation & CSF blockage or are having major Chiari symptoms or both. I would recommend that you get a new MRI in December & get a second Pediatric Neurosurgeon's opinion. I think you would really feel more comfortable having another opinion about your son's condition. I would be at my wits end also. I am so sorry you are having debates between your doctors. Please be sure and let us know how your son & you are doing. I promise every Member here understands.
My four year old grandaughter was diagnosed on an MRI ordered by a gastro doctor. I think she was looking for another problem. My grandaughter has no obvious symptoms other than complaining of a headache at times that are not at all severe nor do they curtail her active behavior. I was sure they would only watch her, but after a second MRI on her brain and spine and her cine MRI, they found a tiny syrnx and the neurosurgeon has no doubt that she needs surgery. I have been very upset and worried waiting for this to occur, but the wonderful people on this site have eased my fears. I now feel that this accidental diagnosis was a blessing. She will have this surgery BEFORE she has any syymptoms or subsequent neurological damage. I hope you find a doctor you can feel confident with. Best of luck and God bless.
There is a fantastic Chiari specialist at Rhode Island Hospital. She is not a pediatric ns but I know she operates on kids. If you are interested I will give you here name. It takes awhile to get in because she is very busy but sooo worth it. She is a very compassionate thorough doctor.
Thank you all for your support. Yes he does have a syrinx, but no symptoms at this time. He was originally being treated by the head of the neurology department at RI hospital when he was first diagnosed. He was not thrilled with the treatment he was receiving and did not connect with the doctors. He is 22 years old. He likes the docs treating him now. I am just frustrated with the fact that they are not on the same page at this time. I am sensing it is because Dr. Chi could not pull up the films. He has them and is copying them to Women and Brighams system in the hopes that he can access them. Weird both docs operated out of the same hospital. Dr. Tyler was able to pull them up and viewed them with both my husband and Nick. I was unable to attend that meeting. We all went to the meeting with Dr. Chi. Same disks and we all watched as Dr. Chi tried to pull them up. He was unsuccessful. I don’t get it. I am so tired and frustrated as I am sure is my son. Because Dr. Chi could not view the films I believe is the reason the docs are not on the same page. However, they both agree that Nick will eventually warrant surgery. The question is when…Nick is calling back Dr. Tyler on Wednesday of next week…