When it comes to chiari, most doctors have no idea what they are talking about.

[Veronica830]

My mom just spent the holiday weekend with me and asked a lot of questions regarding my upcoming surgery. So I told her my whole story from start to finish and it got me thinking. I used to trust that if I felt sick and went to the doctor that they would figure out the problem and prescribe something. My primary doctor sent me to a neuro but felt I was fine. That neuro totally disregarded everything in my MRI report. He asked me if I was having financial problems because he felt women worried about finances a lot. My next neuro exclaimed that my blood pressure and cholesterol were better then hers but was worried about my silent stroke since I'm 32. She felt the chiari was unimportant as most people do not have symptoms according to her. Next I saw a highly recommended neurosurgeon who was not a specialist but knew of chiari. He was very sympathetic but felt that I was in great health according to my test and bloodwork. He noted that the herniation was big but didn't seem to be obstructing anything so my problem was just chronic migraines for which he prescribed topomax. He informed me that my back pain was most likely my recent weight gain and that we should do a follow up in 6 months. He felt the topomax would subdue the migraines and I would only have to take it until I went through menopause as women usually don't get headaches once they go through it. After all of that I gave up on doctors for a while until I got much worst. So what is your doctor (s) story. :)

[ARK1305]

I went back to my PCP and cried and begged for THEM to do something - ANYTHING.  They refused to treat me for the pain, stating "that is what the pain doctor was for".  But FINALLY, I got them to send me for another MRI which revealed the Chiari Malformation.  My doctor called and said the MRI came back and it appeared I had a brain stem injury and there was nothing they could do, I would have to live with the pain...but they were sending me to a neurosurgeon just to "talk".  
When I told my mom what the doctor had said, she immediately knew it was ACM.  She flew back and went to the neurosurgeon with me.  I went in there sobbing as well, I was ready to drop to my knees and beg this guy to do something. But, he read through my records, and did a few tests.  The tests demonstrated I had nerve damage and sensory loss down my left side and it seems to be progressing.  The doctor said to me at that first appointment that "yes, it's chiari malformation, you've done all you can do, you're at the end of your rope, conservative treatment hasn't worked, surgery is your only option".  I'm at the point now, I'm limping to get around because my left leg goes out, my left arm goes numb  or feels like I've slept on it all night, and its moving into my right arm - in combination with the headaches and neck pain.  Chiari does crazy stuff.  I'm just lucky to have found a neurosurgeon who believes in me and all my crazy symptoms.  
So... I'm having surgery on Thursday.  Wish me luck!  
And, I most definitley wish you luck!  Keep fighting for yourself, because no one else will!
P.S.  I spared you and left out about 3-4 other doctors I saw who also called me crazy or at least treated me like it.  

[ARK1305]

I was taken to the hospital where they ruled out meningitis.  I was pumped full of fluids and I felt a little better, so i went home.  Little did I know, this was the beginning to my nightmare of a year.  I had a headache for almost two weeks straight.  The headache finally subsided, but my neck pain didn't.  
I went back to the same doctor who had been telling me I was crazy forever, with vague complaints of pain - but mostly in my neck.  So...what does she do?  Order an MRI of my lower lumbar and sends me to a pain specialist.  The pain specialist diagnosed me with myofascial pain syndrome and put me on tons of meds - none of which were helping.  I read medical records for a living, so I knew I did not have myofascial pain syndrome and I knew the meds he was giving me were not treating the pain I was describing.  I work about 45 minutes from where I live and an hour and 15 minutes from my doctors offices.. and I would drive all the way to his office and go in sobbing and begging for him to do something - ANYTHING to take away my pain (I was about 5 months in to non stop, excruciating neck pain by this point).  He told me he didn't know what to do  as he had no medical findings of anything other than the myofascial pain syndrome...I asked him if they did an MRI of my C Spine, and he looked me in the eyes and said yes. At that point, I knew I was done with him.  I refused to go back.  

[ARK1305]

Veronica830,

I'm sorry to hear you are having such a rough time.  Sounds a bit like my story.  I've learned you truly have to be your own advocate these days.  The past year has been hell for me.  Luckily, my mom has an extensive background in the medical field and understands now what I've been going through (although I think she though I was just as crazy as the doctors until my diagnosis).
Sooo....I'm 25 years old and have been having problems for roughly 5 years.  It started with balance issues and memory problems. When I complained to my PCP about this, she blew me off as a twenty something hypochondriac.  I kept quiet for some time following this, believing I was as crazy as the doctor made me feel.  
Then, about three years ago, the headaches started. They were few and far between, but they were awful.  My doctor diagnosed me with migraines, although no migraine medication would help.  I complained again about balance, memory, and an overall foggy headed feeling and I was made to feel crazier than ever. So...I shrugged it off again.  Then last year, about 10 days before Christmas, I got really ill.  I had gotten a flu and bronchitis.  My head was pounding like crazy and I could hardly move my neck.  I finally mustered up the energy to go into a immediate care facility, and they said I wasn't making sense, my pupils were not reacting as they should, and I was having terrible balance issues and my neck was soo sore, I could hardly move it.  I live in a college town, so they though I had meningitis and immediately called an ambulance (but I had my aunt come get me because I didn't want to pay for the ambulance).