My ns a highly respected ns in our area of upstate,ny. But I’m beginning to wonder. Maybe I’m being paranoid. Idk. He told me I need surgery. From reading a lot of others posts they talk about how many mm they are and the other things they’ve been tested for to make sure chiari was or wasn’t the only problem.
My ns called me, we talked for about 30 min about the fact that I do have the malformation, the success rate he thinks I’d have and to call call next week to set up a surgery date. Am I missing something? Should he be giving me this other info? Testing me for more? Or am I being paranoid? I didn’t really ask him any questions, but that was because I didn’t know what to ask. Or what to expect out of our conversation.
This is all so new to me and all of a sudden so many decisions need to be made. And I kind of feel lost in it. I sometimes
wish I could go back to not knowing I have this so I wouldn’t have to deal with it.
He started by saying that he wants me to have the surgery, that my mri from 6 years ago and one from this year show a significant increase in pressure on the foramen magnum and went on in great detail exactly how surgery was done. We talked about recovery time, what I’ll want and need to have at home. He said he projects a 70% improvement of symptoms assuming the surgery takes. He also said there’s a 30% chance that it won’t do a damn thing and a 2% chance that I’d not survive surgery.
I’ve been working with a neurologist for 6 years and finally got a diagnosis. From there I was referred to my ns. But I haven’t been checked for anything else. My neurologist was convinced that all I had was basilar migraines until my last MRI. So all he’s told me is that he tested me for the migraines, did a EEG, EKG and mri’s and concluded that it was chiari and referred me. My ns hardly asked my any questions. He just went off my neuros notes. He did an additional MRI to measure spinal fluid flow (idk what that’s called) and he confirmed with that MRI that I need surgery. Should I ask more questions? Am I being a hypochondriac by wanting him to do more or by questioning his not doing more? He did mention that if the surgery doesn’t work than that means there more underlying issues to deal with. Is there any testing that can be done before surgery to find and other underlying issues? I want to make the most out of surgery. Not have it only to realize we missed something and have to go back in. You know?