Newly diagnosed..scared..miserable

Hey! I’m a 29 year old mother of five children. After experiencing a plethora of neurological symptoms I finally had an mru and found out today that I have Chiari. I have been in severe, I mean SEVERE pain in the back of my neck every time I bend over or change positions in any way. I’m having numbness and tingling in my hands and feet and a terrible burning in my face. I’m not sure where to go from here, as the nuero that just diagnosed me just basically told me what I had and to follow up in one year with another MRI. This is basically leaving me handicapped. I cooked dinner for my family tonight for the first time in three weeks. I feel so guilty for giving them so much take out but the only time I don’t feel pain is of I’m sitting. Even then if I turn my head certain ways I hurt. I cannot live my life as a busy mom and feel this way. Someone ease tell me what to do from here! I’m inAlabama if anyone knows of any resources available here. Thanks!

Hi Katie! If you click on the tab chiari info for members there is a doctors list. There are three doctors from Alabama on the list. It sounds like you really need to be seen by a neurosurgeon that specializes in chiari.

Kelly :slight_smile:

HI, Katie! I agree with Kelly. Your symptoms sound severe enough to seek a Neurosurgeon. If the symptoms are coused by Chiari, they aren't going anywhere by waiting a year for another MRI. And with the numbness and tinglig- as far as I understand it, it might be caused by nerve tissue compression that can leave you with permanent nerve damage, if left untreated.

One other important thing- if a doctor isn't taking you seriously, DO NOT waste your time with them and find a better one. Your health is the most important thing and a good doctor will treat it with respect and consideration!

Best wishes,


Thank you so much ladies! I am going by the imaging center today to get a copy of the report of the brain and cspine MRI. I’m trying to get in to see a neurosurgeon. The thing is that the ones I called from this site require a referral. I hope I can get the current nuero to refer me. Also, will the report show the degree of herniation?

My first MRI report, 8 years ago, said, "Chiari Malformation", but the herniation mm wern't mentioned. The ones I did this year didn't call it Chiari Malformation, but stated the herniation mm. But the size of it isn't the most important thing. The compression is - whether or not the tonsil/tonsils are pressing to the brainstem and weather or not it abstructs the csf flow. Some people with 2mm have severe symptoms, some with 12 mm have no symptoms at all, although generally, the larger the herniation, the more it should mess things up. For example, I have only one tonsil herniated 6mm. The first time I spoke with my NS, he said, he wouldn't do the surgery unless cine-MRI shows obstructed flow(because of only one herniated tonsil). I guess, if someone had both of them herniated and pressing on the brainstem more obviously than mine is, then the cine-MRI isn't as seful. I don't know. Just my guess. I'm rambling. haha

Just picked up my report and surely its wrong! It says 1.5 CENTIMETER herniation!

Everything I’ve read says MILLIMETER!

Yours probably is 15mm, they just put it differently than most would. Don't be scared of the herniations size. Focus on finding a doctor you like!