no change

[northernstarmn]

IN March this all started waking up dizzy head neck pain aora's in eyes, rininging in ears (no pain). went to doc who sent me to ENT who sent me for hearing test(s) 2 traditional hearing tests and a specialized test (one thats suppose to make you dizzy) and mri results came back clear except for Chiari Malformation 5 mm extention. then sent to a neruosurgeon who sent me for another MRI flow study, came back normal flow with a 5mm extention she said you DO have chiari but your symptoms are not typical of Chiari, (i didnt have the gait the brain splitting headache OR the thingy in my throat blocking breathing) so she sent me to a neurologist who done 2 more MRI's one was more of the back and one was a blood flow or something like that both came back ok expect for the chiari.

I have had all the typical symptoms of Chirai especially in the beginning, neurologist gave me gabapentin to help with the pain, which cause me more mental confusion then i was already having and really put me in a world of my own so we switched out of that and now i am on nortryptline 25 mg pills (i take 75 mg so 3 pills) which do help the pain a little but but i still have this constant head pain and i get mirgraines that take the cake, I still have the rining in my ears and aora's in eyes occasionally, sometimes my face just hurts, i still have the neck pain.. but my neuro says it cant be the chiari causing me these issues because they are not "text book"   and he does not know what is wrong, He suggested a second opinon at the time i did not take him up on it i thought well lets try the meds and see if it helps or goes away as fast as it came LMAO now i sit here and find myself thinking maybe a second opinion may be a good thing.  he has since admitted maybe it is the Chiari be he says he cant be certain because the data shows differently.

UGH!  i to this day suffer with the constant headaches, neck pain, upper back pain, occasional dizzyness, occasional loss of thought/confusion and speech impairment & sometimes i get these pains in my head like someone is poking me with dart and then 20 minutes later i get this killer mirgraine..(which seem to happen mostly around that time of mth for mirgraines)

Yet i sit here with the only answer of CHIARI yet they wont say thats the cause~!?  is there any thing else i should look into with hopes of finding my own diagnosis??? someone please help.

thank you

[selmaS]

HI and welcome to the Chiari forum.

I must say ditto to the previous post....we r all so different there is no way for there to be a textbook listing all the symptoms one with chiari or ne other condition for that matter...we all react to meds differently too.

WHen u encounter a dr that is looking to the books like this , it is lack of experience with the condition to handle it.

Once u get to a chiari specialist u will see a big diff.

"selma"

[flcrakar]

A chiari specialist is what you need! Like many others, myself included, we have been to so many doctors with similar results. It is like being "caught in the wash" and no one wants to take the time of effort to do the research about the condition.

I got quickly fustrated and I am now going to TCI in mid-august. I want the most up-to-date Drs on my side for a change. Not some crack pot who thinks they understand what Chiari is.

As far as text book....LMAO! I have NEVER been text book for anything I have went to the doctor for my entire life! (verified by my mother). There is a list of specialist on this forum....look em up!!!