I am new to this website, and really, didn't think I would have any issues with my fusion for another 10-20 years….BUT….well…let me start at the beginning….
In 1994 I was involved in a car accident, broke C1 and C2. They tried traction which didn't help, and ended up doing a fusion with a plate and screws from my skull to C3…oh and a bone graft from my hip too. Great news is the fusion is completely solid and I am completely neurologically intact. I was 11…and was told this was no small miracle (which I believe wholeheartedly).
About a year ago, I started experiencing pain and numbness…. it is intermittent, and occurs in all 4 extremities, usually just one side at a time, more in the arms than legs and usually on the right side. I didn't originally think much of it, nor did I think it was a serious issue, just one of those things that happens when your neck is full of hardware….my PCP however, disagreed at my last physical and immediately sent me to a neurologist.
My neurologist says problems like this have to originate in the C spine and given my history wanted to get an MRI. Problem with that, is that I have surgical steel in my neck from the fusion 20 years ago (hey, it was state of the art at the time!!). So, the MRI report came back basically saying they couldn't see anything. My neurologist then referred me to a neuro surgeon to see what other tests could be done.
The NS had me go in for a myleogram/ CT scan. Today I went in for my results, and the doc says that it looks like the wires they used when they did the fusion are rubbing against my spinal cord at the bottom of my fusion (C3). When they did the fusion they wrapped the wire under the lamina and over the plate to hold it in place (its really not a plate…it looks more like a squared off 0, or a Daytona racetrack…[_] <kinda like that) He says that he has seen stuff like this happen before in people who've had fusions like mine, with wires…and this is why they don't use wires anymore….because the wires can erode through the dura and into the cord.
Heres the thing….Im trying to do some research on it, only, I can't seem to find anyone that has a fusion that is old like mine. I know I won't find a ton of people with high fusions like mine, but someone, somewhere, had to have a fusion with wires that go under the lamina….right?
Anyway, I am looking to learn about the outcome of the 'revision' surgery to remove the wires…How did you feel before surgery, how do you feel after? How is your function?
Right now I have total function and strength….and my understanding is that if I wait to "see if it gets worse" and it does, that I might not get all the function and strength back that I currently enjoy. But then again, what if I don't wait and I lose some of the function and strength I have now?
Then there is the issue of the dura being damaged and making sure its repaired so I don't get spinal headaches…if the dura is all messed up with scar tissue from the original surgery and from the eroding that has been going on for the past however long….does that mean I could end up with spinal headaches forever?
And THEN theres all the questions I didn't even think to ask my NS….like, what if I get rear-ended tomorrow in a car accident….could whiplash make me worse than I am? Or, What about getting pregnant (Im 31 and just celebrated my 2nd wedding anniversary….we have no kids but are thinking about it)….and I am sure I could come up with a zillion more if I sat here and thought about it too much!
Not to mention the actual surgical concerns….
The doc wants to go in posteriorly (the same way they did 20 years ago) and basically cut the plate so that the bottom portion of it is loose from the rest of it….going from an O to an upside down U….lift up the newly free portion of the plate and carefully remove the wires. He says doing it that way will give him the best visualization of the wires and reduce the risk of new damage to the spinal cord….which he places now at about 1%.
He says that it will not de-stabilize the fusion as it stands now, and puts me in the hospital for 2-3 days with a total recovery time of 2 weeks. This guy practices at a large teaching hospital in Boston…if it matters….
However….Im not sure thats all realistic…some of the stuff I have read on the inter webs makes me think I have a higher risk of de-stabilization/ complications and that recovery time is WAYYYY longer. Even if he is right…what if I am that 1% that gets neurological complications, or de-stabilization??
I realize that Ill probably read more horror stories than happy endings on sites where people post their personal stories…BUT…I am reading the scientific studies too, and even those scare the snot out of me!
Help, thoughts, suggestions, referrals to websites, ideas, are all appreciated deeply!