So, I was recently told that I need to have my C1 C2 fused and I'm not looking forward to even the thought of it. It's not usual, it's off to the left part of my neck more on the back of my head/neck part occipital region. I've seen the images the doctor's have taken, and I can see and tell that it's unstable.
I've searched the web to hear how people are doing after a fusion this high up, and to be honest it mostly sounds like a long horror novel. I understand that pain from the surgery itself isn't a treat, but it's the ongoing pain I've read about that scares me of people remaining on narcotic pain meds with unrelenting pain where no help seems to be within reach. I've read how some people's pain remains or have worsening pain continually after the surgery. Then I've read of those who are fine for a few years to many years when they are suddenly hit with pain that radiates without ever letting up. THEN when help is sought by a doctor, they are only told, "Well, the fusion is holding up." Like as long as your head is in the right spot, deal with the pain.
I've brought this up with surgeons I've met, asking about the known chances that fusing C1-C2 will put pressure in other areas that are bound to result in ruptured disks, arthritic changes, and more. And the surgeons almost seemed perturbed that I asked about that and all just repeated, "The goal of surgery is to stabilize the area." Like I cannot hear or something, I know that doc, tell me what I don't know like the questions I'm actually asking you! Hmmm? LOL!
So, what I gathered from this sort of repetitive scenario is that the surgeons do what they love, cut, hammer, screw...and your resulting symptoms be damned?! I have now asked 4 surgeons their opinion and asked them each what their method is...and NONE wanted to discuss what they would be using in the surgery? NONE knew or would say the name of the procedure they'd even be doing...is this some sort of doc code? I've never seen such a thing...I work in the medical field and if a patient asks a direct question...I need to provide an answer...but these docs squirm and churn out of it...and trust me I was quite direct and was told things like, "It's not a bargaining I'm wanting to do", "It's the best technique available--gold standard" and then one actually shrugged his shoulders!
And truly...all I asked is what does the procedure fully involve and what's the technique called!!! And I'm not in a small town/city, I'm among some of the nation's top ranking docs in their field...and they drop the ball on mentioning much of anything on this? Soooo odd!
Ah, but I digress...I really want to know from real people what your experience has been...did you wear a hard collar and for how long and can you ever take it off?
At what week did you no longer need to take heavy pain meds?
Do you still need to take pain meds of any sort?
Do you feel normal and are you able to concentrate with a clear mind from nagging pain? This is a biggie for me and big worry!
What was the name of your procedure?
When were you able to go back to work or did you have to do disability?
How bad is the pain if they used your own bone for fusion?
Did you have an ortho-spine surgeon or neurosurgeon?
Has anyone gone to Johns Hopkins or Mayo Clinic to have theirs done? Did they use a computer guided technique?
I was someone toying with the idea that if I've always had this threat of death and such, without knowing it--and with some folks I've read regretting ever doing their surgery who feel they aren't living their life anymore--I wonder if it would be so bad to let the way God made me remain? I was born with this defect and was fine until I had a minor neck injury a couple of months ago and I was suddenly met with this being too progressively unstable...
Thanks for reading this drawn out rant...