Hi, I'm new on here. Briefly, my Chiari 1 and Syringomyelia were discovered 10 years ago at age 41 when I suffered a water tubing accident and blew out my one normal cervical disc (I also have congenital fusions throughout my cervical spine). My only symptoms prior to this were severe headaches my whole life. I did have a discectomy and fusion of the blown disc and with the exception of chronic pain I have managed okay since then. I have many other health issues and it is difficult to know what is and isn't Chiari related. I am a Critical Care Nurse and had to go on disability in 2007. I've been diagnosed with severe sleep apnea for a long time now. It's been difficult to control and about 18 months ago I gradually reached the point where I sleep more than I am awake. The breathing machine I am on is almost like a mini vent. We've been working for a year now trying to get the settings optimal so I don't fall asleep all the time. My sleep apnea is now central as well as obstructive. This month an MRI shows I have a new Syrinx in my cervical spine and I am scheduled for decompression surgery next week. I am praying this will somehow help with my sleep issues. I literally sleep all the time. If I try to read, watch t.v., be online, or pretty much do anything I fall asleep. I don't dare make plans or drive because I don't trust that I can stay awake. My husband is very supportive and has assumed practically all household duties. I want my life back. I sleep sometimes for days without being awake for more than an hour or so here and there. Am I alone? I feel so alone and have run out of ideas of what might be the cause. I would appreciate any input.
Thanks,
Nancy