I had my 6 mo follow-up with my NS who did a posterior cervical fusion on c5-7 in Feb despite 18 mos of complaints of sx of upper cervical instability and CM. So, naturally, despite the fusion, I still have all the sx and feel worse by the day. My apt today was frustrating as always....The Dr was nice and all but I think more "PC" if anything. He did listen to me and I think truly believes me but is baffled as to what's wrong. How can that be??? I swear it's b/c the wrong imaging has been done...all laying down...which he did agree. He said that maybe their test equipment isn't sensitive enough to pick up what's wrong if there is an instability or maybe we need to "resort" to doing a dynamic test under xray guidance. Great...I'm all for it.....but of course he'd like to put that off and send me off to another neurosurgeon at Lahey Clinic...... so more blow off. And more time wasted in waiting while I suffer! All the ?s I asked he seemed to quickly dispute but I still think he's wrong and I'm right. I am 100% convinced that it's the whole chiari (non-textbook) and retroflexed odontoid that is causing all of this and it requires that 3-step surgery. I swear it's what I need. Makes me nuts as I get worse every day. We went to a neighbor's bday party the other night. I simply stood there and came home a mess, was a mess all day yesterday to the point that when I went to bed all my limbs were spastic and my nervous system was so "raw" I wanted to jump out the window. The maddening thing is I look ok so it's hard for them to believe I'm as bad as I am. I am at my wit's end. So I guess next Fri I see the NS from Dartmouth then on 9/24 the NS at Tufts and whenever the Lahey NS will see me. Gee...maybe 1 outa 3 of them will be smart enough.
I am in a similar situation. I had my decompression in December and I only had a little relief for a few weeks. I chalk the few good weeks up to muscle relaxers and pain meds. It is really frustrating. I am pretty much back where I started prior to surgery, but not as severe at times. I hope that at least one of NS's that you are seeing will help you find the answers that you need. WE are the only ones that know our bodies! I had my NL call me OCD and say that my NS (his collegue) "meant well." Lol, what a jerk. So, now I am back in the NL/NS finding boat. Please let us know how your appts go! And please feel free to come here and vent all you want! I have been all over this board again lately. We caould all use a little support and encouragement sometimes :)