Hello, Everyone! My sister found this msgboard for me, and I am so grateful to her! I'm so sorry to hear that you all are experiencing OPLL.
I was first dx w/OPLL in 2005 @ the age of 42 and had my first surgery in Apr 2006 @ University of Va, laminectomy of C-1 thru C-5. No hardware, no c-collar, just lots and lots of pain. My symptoms prior to the surgery were numbness and tingling in my arms and a good bit of neck pain. In '05 I found very little info on the web about OPLL. George you must have done a LOT of research. I only found bits of info about it being the "Japanese Disease" and not much more. That first surgery left me with neck pain and the feeling like my skin hurts (dont know how else to describe it) on my right shoulder and upper arm, and very limited ROM in my neck. But it's nothing that I cant live with, and the numbness and pain in my arms went away.
In 2007, I started having problems with my legs. Tingling, inability to walk very far and general clumsiness. I put it off for a long time, and by the time I finally saw a doctor who would listen to me, I was losing balance, falling, and losing control of my bladder, and generally everything from mid-hip down. I ended up having another laminectomy, no hardware, at T-8 thru T-11. Again, left me with weakness in my legs and extremely sensitive skin on my legs and feet (my feet have never been ticklish or sensitive, now, my husband can expect to be kicked in the teeth if he tries to tickle them... and it's an INvoluntary reaction!).
2008 was a good year. No surgery!
In recent months, the tingling, pain and numbness returned in my arms, as well as pain in my neck. I have been seeing a chiro; really not all of them are quacks. She is wonderful, knows her limitations and has been trying very hard to figure out why this keeps happening, and now, why it is happening so quickly. Anyway, my PCP referred me to a physiatrist who sent me for an MRI two weeks ago, C and T-spine, and it aint purty. The OPLL has worsened in the area of C-4 and the MRI report states focal myelomelacia, as well as further narrowing of the spinal canal basically from C-5 thru T-11. I may be facing surgery again.
I suppose that my main point here is that, as much as I detest and dread the idea of surgery, I will do what needs to be done. But, isnt there SOMEone out there who is doing research to figure out why we are going thru this? Given that we are all here, it is probably safe to say that OPLL is becoming more common or more recognized, so there must be something we could do besides pray that we dont spend our 'golden years' paralyzed. Do we need to corner some researchers somewhere and threaten them with our walkers until we get some answers?
OK... I've rambled way too much. By the way, I'm very glad I found you. I find that humor helps me get thru the trying days. I firmly believe that laughter really is the best medicine. Hope you all are having painless days!
Rhea