Today I got my new CTO jacket. Its a brace that is supposed to simulate having the neck fused even further than mine already is. My surgeon thinks that I may need another fusion done down the road so he wants me to wear this brace for about 6-8 hours per day for a few months. Its really uncomfortable and after about an hour, it really hurts my jaw and teeth. This is because it is pushing up on my chin, putting strain on my jaw. Its most comfortable if I'm moving around, instead of sitting still, like at a desk. I have already been for a walk and Baxter did very well healing beside me. Only problem is that when he is healing well, I can't see him. I asked Nate "Is there really a dog attached to this leash that I'm holding?" Many of you have already asked for pictures, so here they are.
Wow!!Heather the brace looks very uncomfortable. Glad you are trying the food route. Caffine in drinks and chocolate are bad for me. I had told Linda long ago that I wish you would try to give up coffee etc and see what that does for you. Glad you have given it a try. Hope it helps. Kathy
Retroflexed odontoid
Heather,
I am a 38 year old female from Kentucky who has only recently been diagnosed with Chiari and a retroflexed odontoid. When doing a Google search for RO, your blog came up. I've just finished reading every one of your entries now with much interest. I'm scheduled to go to TCI on April 23. PLEASE email me if you can. I'd love to speak to someone who is going through the same thing as me. I'm finding that while Chiari is rare, Chiari with a retroflexed odontoid is even MORE rare so I felt like I struck gold when I found your blog (while I don't wish this condition on anyone, I hope you know what I mean!) I know you're going through a lot now with the new brace but please email when you can.
Blessings to you and yours,
Leslie Witty
Bowling Green, Kentucky
need info
I am beginning to wonder if I have Chiari and/or retroflexed odontoid. I have daily migraines that are not responding well to medication,dizziness and nausea when I turn my head too far or look up, constant fatigue, memory loss, transient vocabulary loss, and occasional sudden gastrointestinal disturbances. My whole spine hurts all the time. I've had MRI's, but those are only as good as the doctor who reads them, and they were looking for tumors, not Chiari. I'm not even sure they got "pictures" of the brain stem. I also went to Barrow Neurological Clinic and they refused to look for anything they did not already suspect(vasculitis), which they ruled out. I need a really good doctor. Can you recommend someone?
arnold chiari malfromation type 1
My name is crystal and i am from prestonsburg, ky i was diagnosed with arond chiari malformation a year ago and i am seeing a surgeon in Tenn. if you have any suggestions for me please let me know.
thanks