Anyone else out there?

[MalformedTara]

My junior year of high school I was diagnosed with Chiari 1 and a 9mm herniation. According to the many doctors, neurologists, and neurosurgeons, I am fine and I just need to learn to live with my symptoms. I refuse to accept such an answer, I want a doctor that is willing to push the narrow limits of traditional medicine and actually do something to help my symptoms. I've (sadly) come to terms with the fact that they cannot and will not help me in any way other than loading me with barbiturates or brain surgery. I've been told me options are either 1.) Take pain medication to get me through my days, or 2.) Have brain surgery that may or may not help the symptoms. I could write a book on why these are the worst options possible, but that's for a later time.
I am 20 years old..I have so much life ahead of me, I'll be damned if my best option is chemicals that will take the edge off of symptoms, but cause organ (or God knows what else) failure 30 years later. I don't want short term relief, I want long term solutions.
My favorite part from the chiari research done thusfar is: "Traditionally, Chiari Malformation has been defined as the cerebellar tonsils descending more than 3-5mm out of the skull. However, research has shown there is no real correlation between the amount of descent (or herniation) and clinical symptoms. Some people with herniations of less than 3mm are extremely symptomatic and some people with quite large herniations are symptom free. Because of this, doctors are now focusing on whether the cerebellar tonsils block the normal flow of cerebrospinal fluid (CSF). The current theory is that disruption of CSF flow is a more important measure than the size of the herniation."
So they're saying that what i was diagnosed with, and why they refuse to look into my symptoms has no correlation with my symptoms in the first place?
So my question is this; Does anyone know of a doctor that won't give me the run around, and might actually give me some constructive advice? I know that is asking a lot, but I'm desperate at this point.

[desertstorm2009]

Hi Tara....
Your story sadly sounds all too familiar. For my daughter, she found Dr Oro. She is now back to living a normal life and you can be as well. I know it's frustrating.... Hang in there :-) Lisa.

[girlinxile]

I would say to contact a Chiari specialist if you haven't. I have tried most pain medications... I only had to try to make it to November and I couldn't do it and rescheduled it sooner. Narcotic pain medication barely takes the edge off so why bother. I started Lyrica which has helped me be able to feel my hands again but the head and neck pain persists. I know many have found relief with massage or accupuncture so I would at least give that a shot maybe.... but honestly surgery is my only way to have any long term results. I get your fear though.. my 17 year old is having many symptoms and her herniation is a small one... and she is freaking out (as am I) because she has a lot of life to live before she would consider surgery but she already has almost daily headaches, numbness and tingling in her hands and severe neck pain. She refuses to take pills unless it just gets ridiculous and neurontin seems to help her. I will be checking back to see if you find anything but finding a chiari center may be your best bet