Hello all. I have been reading your posts this morning and I am happy to know I am not alone in this
I was diagnosed with a 6mm Chiari 1 Feb 2001. I have had a daily headache for over 6 months now. I have really bad nausea,difficulty concentrating, occasionally the left side of my face goes numb. My neck is really tight on one side.
My neurologist says that my Chiari is minor and couldn’t be causing my symptoms. I have tried multiple meds and nerve blocks to my head with no relief.
Tomorrow I have a consult and more tests at the Chiari Center in Milwaukee. I am scared but hoping to get some answers.
Good Luck at the center in milwaukee, i have noticed Chiari docs are alot more willing to listen and believe there is a problem. I took me 2 1/2 years to find a doc that would listen, the rest made up minor excuses for all my problems, my new PCP figured out there was a problem the first day I saw here and i had MRIs done that next week and at the neurologist the week after that, although he seemed to think my 13mm herniation and sprynx was not that bad and said lets see how you feel in a few more months, I called back the next day and asked to be refered somewhere else i couldnt wait any longer. i went and saw Dr Oro in colorado at the Chiari Care Center and they did more scans which showed I have a almost total blockage and surgery is scheduled for sept 1st, i was diagnosed in April. they also gave me better muscle relaxers that are "slow release flexaril" so they dont put me to sleep and can take them during the day, this has helped SO much, since i got them i have only lost feeling in my hands once which is alot better than daily. the tightness in my neck is less too, still taking pain meds but not as much.
i was surprised how many of my problems were related to chiari - my PCP told me its not normal to feel bad all the time, to hurt all the time, so don't give up until you find a dr that listens and has concerns for you not feeling good. even if your symptoms arent from chiari they should keep looking till they figure it out.
RUN, MINDY, RUN..from that NL who CLEARLY knows nothing about Chiari!!!!!
I am so glad that you took it upon yourself to set up appt with the Chiari Center.....From what I have read about the place you are going has only been good..they know their stuff.
I, too, had went to neurologists who had NO experience with Chiari..though they tried to 'bluff their way'...now, looking back , I can actually laugh at some of the craziest statements some of these NL's said....My 1st hint that the neurologist(NL) was not well versed in Chiari was that (more than 1 NL) the doctor could not even pronounce the condition correctly!!! Thats when I should have...RUN!!!
Sad to say, most of us here have gotten the "Chiari DOESN'T case ALL those symptoms".....I use to leave the NL appt apt in tears.....But I was smart in the fact that I brought one of my best girlfriends with me to 2 different NL appts with 2 different docs....She is brilliant, well spoken and a researcher for Lilly pharmacuticals.....when she joined me in the examining from...she took out her computer and documented the appt!!! This did not go over well with these two NL's..even today, Kris and I crack up at the stupid thing these 2 NL's would either say or ask...We can laugh now b/c I was properly Dx'd and Treated by a good NS.
You seem to be on the right road..going to the Chiari Center..keep us posted on your appt.
i also had a bad NL, i then started just working with a nuerosurgeon, who has been fantasic, he checked me every 6months (i also have cyst/intracranial lesion in spine) when i told him about things getting worse, he ran MRIs straight away, and next day i had decompression surgery, (i was in hospital to remove spinal thingy i didnt have that done in the end)
my headaches have changed, and im getting more energy,
i also suffered from nausea, i take 10mg of metoclopramide, thats really helps,
i hope that going to a specialist that knows alot about chiari helps you, it sucks to feel the way you do,
Just wanted to check in and see how your appt went and the WI Chiari Center?!?!?!?!? Did it go smoothly? Did u find the answers you were looking for? Let us know!
I have the same herniation. My doctor said the same to me! My chiari wasnt large enough to cause the symptoms. But i know these headaches are far to constant. I am not financialy able to go to milwaukee, please let me know what the doctor says. Hope all goes well