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.

you need a referral to a neurosurgeon....and dx anything over the phone is p.p. medicine, if you have no hx of migraines, this was esp poor ....i would say get thee to the nearest teaching hosp. and raise the most heck your able.......the syrinx issue i can't help you with, though i do believe they can happen anywhere....

Hello May,
My story is a little similar to yours. I have a 9 month old daughter, so I gave birth in April 08. While in the summer, about June/July, I started having back pain. I did get an epideral and so I honestly thought the back pain was from that. So, I decided to go to the doctor becuase I would wake-up in the middle of the night from dreams that my back was being stabbed. I also did have pain during the day, but mostly toward the end fo the day. So, I went to the doctor, she ordered a regular x-ray and everything was normal. Then I had an MRI. This was in October. During the MRI I denied the contrast since I would have to "pump and dump" for 48 hours. They told me if they found anything they would reschedule so I could store some milk. Well, before I left my next appointment was scheduled. I called my primary doctor and she said they had found a sryinx. Since they found the sryinx they went ahead and did a whole scan and found I had a Chiarri malformation. So, I did my other MRI with the contrast. Then I went to my doc so she can tell me exactly what Chiarri is, but of course I am her first patient ever to have it, but she did already schedule my appointment with a neourologist and a neourosurgeon. I have met with both of them already and have had some nerve tests done. My neourosurgeon did say the back pain isn't caused from the sryinx, I do have some bad disks (not quite sure if I believe that cause it never hurt before, but then being pregnant does a lot to your body). I did learn that you can have Chiarri without a syrinx. So, you should totally look into getting an MRI. My neorologist told me at my first appointment that the first visit he usually schedules an appointment with a neorusergeon. So, I hope that helps somewhat.
PS I am probably looking at surgery in May, but I am now on the quest to interview different neuorsurgeons cuase I am going to be very picky!