My 11yo daughter was diagnosed recently with Chiari I with syrinx. I we are still waiting to see the pediatric neurosurgeon to see if surgery is recommended. We waited to see the pedi neurosurg for 3 weeks, and then when we went in for the appointment, we didn't get to see the doc, but were rescheduled for another 3 weeks later. So I have been spending a lot of time wondering whether or not she will need surgery. I have been assuming that she will need surgery based on the fact that she has a syrinx. But I'm not entirely sure, because she has NO symptoms that are affecting her daily life. Her only symptom is a mild scoliosis of 14 degrees -- not severe enough to warrant scoliosis treatment -- caused by the syrinx. Other than that she has no symptoms, nothing affecting her quality of life. So I guess there may be a possibility of opting for monitoring instead of surgery . . . ??
But basically everything I read about Chiari/syrinx has to do with decompression surgery. Does anyone have any kind of experience with having Chiari I with syrinx but not having surgery? Or should we basically assume that things will just worsen unless and until we have the surgery?
I'm just casting about, trying to figure out what our possibilities are, since I've been waiting and wondering and confused for weeks and still have several more weeks to go until we can meet the pedi neurosurg.
Thanks for anything you can tell me!