Hi. My name is Amber. I was diagnosed with CM1, syringomyelia (C1-C10), and syringobulbia in March of 2015 after having MRI to check for MS because I was having muscle weakness in my legs, ankles, and hands. I was also having severe exertional headaches. I had surgery on June 10. Craniectomy, C1 laminectomy, and duraplasty using my own tissue. I woke from surgery with numbness: both feet and legs, butt, back, genitals, belly, right arm and hand. I also had bladder and bowel issues and very bad balance. I initially couldn't walk, but was able to get around with help or a walker after a few days. I stayed in the hospital for 10 days as the Dr was trying to figure out what was going on to cause the numbness. He had never had this happen to a patient before. A month later I developed a pseudomeningocele and had surgery to repair the patch on July 29. A bovine synthetic patch was placed over the original, I believe. I am now able walk, but still have the numb/tingly feeling - my legs, feet and right arm and hand are the most bothersome. The other areas have gotten better but not totally normal. Still have some balance issues but nothing major. I have been denied disability. Just wondering if anyone would have some insight on what this might be, if I can expect to get my feeling all the way back, and if I should pursue the disability. I have recently had another MRI and my syrinx is unchanged. It did say I have a large Craniectomy, more so on the right. I cannot raise my head suddenly or turn it go the side quickly as it feels line I am squishing my brain and it gives me an instant headache. I am a school bus driver and have not gone back to work yet as I can't really feel the bottoms of my feet and feel this would hinder me from being able to be a safe driver. Any input will be greatly appreciated.
Ps: My doctor was not a Chiari specialist. We do not have any in south Mississippi that I know of.