What am I suppose to do now?! Frustrated beyond belief!

Well I went to the ns yesterday and now I’m back to no answers! My Chiari is a 4 mm n he told me surgery will do no good n it’s not bad enuf to b causing me my symptoms. He said the twitching, stuttering, ect is not related to my Chiari and I asked him what was causing it n he said he had no idea, he only deals with Chiari n that’s not my problem. Then he tried telling me it was migraines and I know the difference between a migraine and a Chiari headache, I’m sure u all know how tht feels! So I’m back at square one n going to nl. If surgery really won’t help my symptoms then it won’t but what can I do to get back to normal? I feel so hopeless now! I cried all night but have realized today I cannot change this situation so I am going to try to find the best way possible to deal with it. I just want to feel like myself again n work n play without it knocking me down for 2 days. My twitching continues to get worse along with other symptoms but the ns told me it can’t get worse, if I have a 4 mm herniation then that’s where it will stay n nothing will get worse due to Chiari so I need to figure out what else is wrong with me. Is that true? Can I get some input from u all Plz, ur the only ones tht seem to get me! My mom was just like well he’s the specialist so I’m sure he knows but I know how I feel! So frustrating, I’m so glad I finally decided to join this group, u all r amazing ppl!

My herniation was 2 mm and symptoms got progressively worse without herniation changing. First time I went to NS he said not severe enough for surgery, waited a year (symptoms got worse) and saw another NS who specialized in Chiari. He told me I had a severe case and did surgery. I am 50% better and can now live with it! Good Luck!

Wow well that’s awesome for u! Not awesome you had to wait so long tho, that’s my problem…I just want to be normal again. My ns said symptoms do not get worse over time and I know better bc I know my are! How was ur circulation the first time and second time you went? My ns said my circulation was still good even with large tonsils n 4mm and he said it would always stay tht way yet I c all the time how ppls change…so confused! Just in the last few months I’ve began twitching stuttering, ha r worse n pressure is unbelievable! I feel tht no one will listen and believe what I am saying! The thing is I never went to drs bc of this reason but when I started the stuttering n twitching it scared me enuf to go n now I feel it’s pointless n now y I never went in the first place! I’m so happy u found someone tht will listen to u! And I’m even more happy tht u feel bettern can lead a somewhat normal life. Thank u for ur reply, it means a lot!

We have all been there. You just need to find someone who can and will take you seriously. So many doctors are not educated in Chiari and have no idea. Keep pushing on until someone listens (that is what we have all had to do and some of us are still doing....Good luck!!!