Just read your post - are you in the Chicago area, or traveling to get there? I'm in WI and finally found wonderful NS in Madison, WI.
Let me know if you would like more info.
By the way - my son had the surgery and re developed problems. Many docs just say it's a migraine, but the sense of pressure vs migraine - two totally different things! My son has the same issue with that pressure sensation and it can be really awful. He's 18 now.
Sherimom
I feel your flustration. I was in the same position 2 yrs ago. I was turned away saying it wasn't important. Well I knew better, and I finally found a NS that understood and helped me with surgery. Just keep being persistant. Only you know how you feel and you will find the answers, just be a little patient. I know how hard this can be when your in pain, and you don't know where to turn, but your heading in the right direction. Better days ahead my Chairian friend.
Linda :)
A true chiari specialist will know exactly what they are looking for. Keep us updated. I know its very frustrating but its your body and you know it best so get a true specialist opinion. Good luck :)
I haven't been checked for any of these. Will the chiari dr do that?
I can really feel ur frustration...please wait until u see a true specialist...too many nl and ns are not educated enough on our conditions.dont give up...i know the run around is not fair and additional stress.many of us had to go thru several non sense diagnosis like anxiety disorder etc...good luck for ur appointment and kedp us updated on ur journey
Syringomyelia, ehlers-danlos,tethered cord, ICP,disk issues, sleep apnea,retroflexed odontoid....
These r all things that can affect u with similar symptoms to chiari....
I don't believe so. What are they?
Hi...yes, u could have cervio cranial instability or a retroflexed odontoid either way it will cause pain and many of the same symptoms and issues u r having....
Have u been checked for related issues?: