Hi,
I am new here and have some questions and can hopefully find some answers.
I was dx this summer with a Chiari Malformation. It sure explained a lot of the issues I had been having for the last 10 years and I kick myself for not looking for answers harder. I had previously been dx with chronic fatique syndrome and assumed all of what I was feeling was related to that. The numbness and weakness however was really interfering with my job so I went to my gfp thinking I had carpal tunnel. Fortunately the doctor that did my emg was uncomfortable with my description of my symptoms when the emg didnt show carpal tunnel and started asking me questions. He then talked with my gfp about his concerns and more tests were ordered ultimately leaving me with a dx of symptomatic cm1 7mm on the right and approx 3mm on the left. I have too many syptoms to list here, but my concern is the back pain that started right about the same time as several of my other symptoms, during my last pregnancy with my son who is now 8 years old.
My neurologist was not concerned about my back pain since he had done an MRI of my cervical spine and found no syrinx. I went to my gfp and told her of my back pain and she sent me for an xray that showed mild deterioration in the area where I have pain. the pain is not constant but recurrent throughout my day. At its worst when I get out of bed in the morning, and so severe that I cant stand up straight. I may also mention that I also have severe pain in my feet and legs when i get up as well. It lessens as I am on my feet but then I go to work and sit in my chair. I get up to go to the bathroom and again I cant stand up strait and although not as bad as the morning, I experince the pain in my legs and feet. Its miserable and my gfp has ordered pysical therapy and they are treating me now for posture issues as I seen to have compensated for the pressure in my head by destroying my posture. The physical therapy is ok and the stretching feels good most of the time but some of it causes an intense burning in the area of my back pain, mid thoracic area, through my bra strap and below. My question after this explanation, is can this be an indication of a thoracic syrinx, and how likely is a thoracic syrinx with CM1 malformation?

My gfp has decided that in light of the fact that my neurologist has decided to do nothing and have a wait and see attitude after I couldnt tolerate diamox, dx me over the phone with occular migraine after I lost vision to blur and double vision in one eye (right side) for approx 4 hours after taking a nap and did not follow up, that I need to go to U of M for a second opinion.

Should I push for a full spine MRI or is it likely that i am just getting old and suck it up like I have for the last nine years.

My gfp has prescribed Lyrica for pain since my neurolgist has given me nothing for pain since I told him that I cant tolerate the side effects of the Diamox.

Any suggestions?

Confused and in pain (nearly constantly)
May Cross in Northern Michigan

PS...sorry this is so long...I just hope someone can help point me in the direction of taking control of my own care.

I think you should find a Neurologist in your area who specifically treats Chiari. A wait and see attitude isn't a good thing if you have Chiari. There are many good treatments but you don't seem to be getting any. You can find one by posting at asap.org