I am new with Chiari had my surhery in July 2012 along with some others at the same time. Doing really good too. The symptoms I had have went away and haven't returned and I have no new ones. But I would let you NS knlw of all the symptoms or problems that are happening cause it can be the little things that help. They found my Ciari by me telling the DR in the ER that my arm went numb.
Thanks for that. I'll write some things down. When you've lived your whole life with weird symptoms, it's kinda hard to know what to present to the dr. I mean, what is normal?
You make a good point, and I will remember that when I meet with him. Thanks,
Had they ruled out Ehlers-Danlos for u? The reason I ask is those with EDS can also have ceriocranial instability which can cause issues in the cervical spine.
I agree with Frankie that u need to tell ur Dr about all issues/symptoms u r dealing with, in hopes it will help the Dr pin point what is going on.
Thanks. Just saw the NS today, and the good news is that he didn't see anything on my films that concern him. I have some degenerative disk in the cervical spine, but have had for years.
Dr Capocelli said that what I am having is common to a lot of Chiarians both pre and post surgery. It's called "Autonomic Dysregulation", which basically means that my autonomic nervous system is not responding in typical time. He does want me to have the eye looked at by an opthamologist.
I am to drink eletrolyte-balanced fluids and walk daily to help my cardiac system to re-regulate and hopefully the rest of my autonomic responses with follow suit. It goes away with time, but I can modify my behaviors to try and help.
So glad to hear that it's not something scary. Just more Chiari related "time will make it better, eventually" stuff.
Thanks for your encouragement!
Abby, I feel the walking I did which I started with my walker when I came home was a huge help to me and how I felt as were the neck exercises it is important to move post op to avoid blood clots, scar tissue and the muscles getting tight....
Keep us posted : )