NeuroTalk Support Groups - Questions - Syringomyelia or Chiari 0

Hello! I have had back pain for the last 3 years, getting worse consistently, and headaches for the last 12 years that have gotten unbearable. In the past, doctors gave me glasses and anti-depressants and sent me to a chiropractor for headaches, but I gave up on all of them. I'm in the military now and the pain has gotten much worse recently, so I decided to look more into it. I had to go through all the "treatments" for generic back pain, which took around 5 months before they would even give me an MRI. They found a syrinx in my Thoracic spine (T9-T3) that I have been told by multiple doctors is unusually large. I have also been told by 2 neurosurgeons that it is "too risky" to operate on, depsite being told it's at a serious size. Beyond that, I would really like to know the underlying cause of it, but it seems that it doesnt matter. I expressed that my headaches are so intense that I can hardly move at times because I will aggravate it with the smallest motion. One doctor mentioned that decompression may help with that, though Chiari was not seen in my MRI images. I was only told me to come back in 6 months for another MRI and I was given neurontin in the mean time. I am getting so frustrated living day to day with this constant pain and not being able to sleep! Is there anything I can do to be more proactive with my situation and make the doctors understand that it's hard to live like this? How do I convince a neurosurgeon that the "risk" is worth it, if it means getting rid of this pain? Also, does anyone know of specialist in these areas around St. Louis? Insight in any way will be helpful; I would like to know my options, but all I'm getting is "too risky".

Thank you,
Mandy