First Neurosurgeon's appointment

We have our 5 year old angel’s first neurosurgeon’s appointment on wednesday, really not sure what to expect! She has a 10 millimetre chiari, is this the ‘norm’ can it get bigger or worse if we don’t operate as they have said theres a small chant that they won’t???

God be with you and your little Angel. I am new to the group, just in the start of my testing and waiting to confirm my diagnosis later this month. I hope the road ahead is a smooth one for you all. No one should have to suffer from this disease especially a little 5 year old!


Thank you for your kind words Lily, I am really struggling with this.

Thankyou so so much, this has helped a great deal

Thankyou all for your kind words, I find this group very comforting :wink:

Yes, Chiari does run in families. My nephew suddenly became numb on his right side (21) they thought he had MS and then some one else read his MRI and saw the CM! He had a decompression 3yrs ago, doing good but never regained all his strength. They live far from me so I don't have all the details. But here I am 58, and have had horrible HeAdaches and other symptoms for years and Viola" I am found with it. My mother had terrible headaches and migraines for years. She had me late in life and they didn't do MRI's back then. I bet that she had one as well, she had lots of symptoms that I can remember! I go for my Lumbar infusion test on the 29th, I am very eager to get those results. I also have had the vocal cord changes, I have Pulmonary Hypertension as well. Went to a EENT Dr. he said my throat and vocal cords were normal but there was pressure on them. He believed from the Pulmonary Hypertension but now I know better. This is awesome because there are so few Drs. that really know about this we can help educate each other. I am fortunate the Dr. I am seeing has done many decompressions from peds on to adult, I am fortunate to have been sent to him. I am in Charlotte, NC and go to Carolina Neurosurgery and Spine. I have gone for spine surgery as well, you would have thought it would have been seen on the cervical MRI. The Dr. said that after the Lumbar Infusion he might send me for a Cine MRI. I wish I could have had it before the Test so we could have had more answers on the 29th. I have waited this long, I have someone who can help me, I will wait for him to do things as he feels justified.

Good thoughts for all!


Let us know how the appointment went! Best wishes!