On Tuesday my wife and I met with Dr. Recinos, a Neurosurgeon who specializes in pediatric and adult CM at the Cleveland Clinic. She was amazing. Everything you would want in a doctor. She reviewed all my wife's history, imaging, and talked to us for quite a long time. She even did some psychical exam to understand her physical symptoms better. She spoke to us like you hope a doc would and explained and showed us everything that she was putting into her thought process.
She eventually told us that based on everything she was seeing, my wife's transient (and often painful) tingling and numbness that had gotten worse in the past 2 weeks, as well as her neck pain and headaches were most likely not being caused by her CM1. Her CINE flow had been marked "restricted" by the radiologist, but upon review with her, she was able to see what she called good flow. Also on her MRI's you can see that neither her brain nor tonsils are being squeezed or compressed. Even if they are hanging down a bit. There seemed to be plenty of space for CSF flow and we saw it moving on the CINE MRI. Dr. Recinos said "it was a little crowded back there" but not so much to be causing any issues. My wife also never has any pain during any straining or bending. Every time she coughs or sneezes I ask her if it hurt and it never does. After some talking with the doctor we realized that her symptoms were ALL sensory. No problems with walking, talking, vision, swallowing, balance, etc. All GOOD NEWS! She ordered a Cervical and Spine MRI w/ CINE flow and w/o contrast to see if there is anything going on in her spine that would cause her neck pain and possibly headaches. Also good news. The MRI as well as meeting with a new Neurologist who specializes in CM and pain management is all happening next Wednesday.
We also discussed the medication she just started on 1.3.12. She started to take Gabapentin 100mg once a day for 3 days, then twice a day for 3 days, then three times a day until further notice. Well the NS thought she might try going off the Gabapentin to see if her symptoms changed. They did. She had taken one on Tues morning and didn't take another. By late afternoon, all the random and VERY painful tingling and numbness she felt in all different parts of her body was gone. On Wednesday the same. The only symptoms she has now is mild steady tingling & numbness in her left hand and left foot, pain on the middle to top of her neck, and pretty bad headaches. I think the Gab was working on her headaches as they seems worse since coming off. But the apparent side effects in no way justify taking any further.
So we are thankful that her CM1 does't seem to be her problem, although now we have to figure out what is. A blessing and a curse. More good news is that we have all kinds of imaging and information as a baseline in case her CM1 does start to cause her more attributable symptoms in the future. Or any other noggin' problems for that matter.
Will continue to update as appropriate.