Hi All!My 6 year old's son's first Chiari appt is tomorrow with a neurosurgeon at Hershey Medical Center. A little background...our son was adopted when he was 3.5 years old from Ethiopia. He was severely malnourished those first few years. Since coming home he's done beautifully, but has struggled with developmental delays (specifically fine motor arms and hand strength), balance issues, coordination, and growth. He's 6 years old and only weighs 27 lbs despite great lengths to help him gain weight! He's one amazing kiddo and has been through so much. We kept attributing all these "symptoms" to his time in Ethiopia and living in an orphanage. As I research Chiari, I'm convinced more and more that the Chiari is actually the cause of many of his "symptoms".
He's at 7mm and also has diagnosed growth hormone deficiency (which I understand can go hand in hand with Chiari). Does anyone have any suggestions on good questions to ask at our appt? We're totally new to all this! I already have down to ask about sleep apnea testing.
Ju Jo,
Under the doctor tab at the top of the page there is “101” with suggestions of what to ask and bring. I would also suggest that if surgery is being discussed to find out exactly what is performed/ what kind if decompression is done. Every surgeon differs in their approach and for different reasons. Here are the most common procedures that come with the surgery:
Bony decompression only- only removal of sub occipital skull. Some people that have this done will eventually have another surgery to open the dura.
With plate to the back of the skull- why or why not does the surgeon place a plate?
Duraplasty- the dura matter is opened to create more space, then a material is sewn in to replace it- why or why not? This where I would ask what is the incidence of CSF leaks for this particular surgeon. Some surgeons will not open the dura because they have a higher rate of CSF leaks.
Laminectomy- removal of the back of C1 or sometimes c2 and 3 to create more space for the spinal cord.
I would also raise the questions if your son has:
Hypermobility syndrome/ Elhers Danlos Syndrome- common among chiarians and can cause instability of the spine and at the cranio cervical joint.
Dysautonomia- deregulation of the autonomic nervous system, can be treated with medication.
I know this is a lot, but these are things I would want to be solid on if it were my child.