I'm still waiting on results back from my latest CT, but my NS suggested that it's possible I may, also, have OPLL. Based on his explanation and what little i've been able to find online, it would definitely make sense.
I have had tingling/numbness in my right hand and fingers for a very long time; i just assumed it was related to multiple surgeries on that arm causing permanent nerve damage. However, with really bad neck pain over a course of a few weeks, I jolted up one night because my leg had a sharp spasm and felt like I had just ripped the muscles out of my thigh. Doing this caused so much pain in my neck and back that I couldn't catch my breath, let alone count to 10. We visited the ER, and long story short, after several visits, with pain getting worse and things such as coughs/sneezes causing overbearing pain in my arms and numbness spreading, I visited a neck doctor.
A CT and several X-Rays showed that my C5-6 and C6-7 were bulging pretty severely and even pushing into my spinal column. Several months of non-invasive work (PT, meds, stretches, time, and even 2 cortisonal epidurals at the site), we risked an MRI (with metall all up and down in my arm) to find that it was worse than we had thought. Pain had increased from a 3-4 daily (on an average day, 5-6 on a bad day) to 5-6 on a regular day and 7-8 on a bad day. All this was while I was taking Flexeril (muscle relaxant), Norco 10-325 (pain med) and Ibuprofen 800, all twice a day (except the norco which was as needed up to twice a day).
I visited a surgeon who suggested I do an ACDF and get this tissue 'cleaned up' around my spinal column because it wasn't as thick as he thought it should be and it was almost nill near the herniated discs. He suggested that I may have OPLL at the site and so he ordered a CT that I just got back from. My surgery is on the 13th of this month. I've been off of the Ibuprofen for just over a week now in prep for the surgery (it's a blood thinner) and as such, my pain is regularly a 7-8 and on bad days it tips the scale. My norco was moved to up to 4 times a day, but it barely takes the edge off of the edge, let alone helps control the pain so I've been sleeping and working 24/7 on ice packs, hot packs, and a machine that runs ice cold water over my neck/back just to keep the pain to a level where I can get a few hours of sleep and a few hours of focus at work as well as in attempts to manage the numbness. Had a scare the other day in which my entire right arm went numb. Safe to say I almost panicked. Ever since I had to stop the Ibuprofen, the shakyness in my hands/fingers have increased drastically and my weakness of hands is getting worse. I cannot believe i'm saying this, but I really look forward to this surgery as I'm having difficulty fending off the symptoms, much less being able to take care of my 7.5 month pregnant wife and our soon-to-be daughter (despite me looking forward to being a parent).
I should know whether or not my NS thinks I have OPLL for sure or not by next Monday or at least by the say of my surgery on the 13th.
On a side note, I've noticed that my migraine count has increased pretty severely with the onset of the pain that is now almost unmanageable in my neck and back, so I wouldn't be surprised if they are somehow related.
Whether or not I do have this, or i just have a form of Panniculitis: the tissue around the spinal canal just didn't look right in the MRIs or the original CT and there's definitely a deep strain to my spinal canal around the C5-6 and C6-7 and a minor strain on the other cervical positions.
I recall this thread :
Has anyone have experience with OPLL (Ossification of Posterior Longitudinal Ligament) and
OPLL - Part II. In there talk was started about
setting up a site that communicates information about
this condition that to this day still does not have a lot of information readily available to the public. I researched the heck out of neck/back diseases, disorders, etc before going in to talk with my surgeon and still felt caught off guard when he mentioned the possibility of OPLL. It hadn't even come up in my searching; not until I had a name could I find it.
I write software for a living, which includes web-sites. I would be interested in helping get something like this up and running if other parties are interested. I have a site that I could host from for now (wouldn't cost any extra money) until we can find a more permanent or appropriate place to store it. I believe that
@NanMac or
AlexO had brought it up.
This service would free/charitable because, whether or not I have it, this is a real condition without much for people to go off of and personally, I think it would be good to have a place where people could talk about
it. Fellowship with others who share similar symptoms, life conditions, et al have shown more improvement in way of life than many other techniques. It helps to heal the mind and the soul knowing that you are not alone in your suffering. Ditto for family members.
As a good doctor of my Mom's once said: "Sufferers of a disease are not the only victims; the family members that live with you also have to endure as well" so anytime my Dad would take my Mom to visit this doctor for checkups, he would always ask how my Dad was doing as well. (Please try to keep that in mind fellow sufferers, that while it's not your fault, your family members are suffering alongside you just in a different way).
I know that some of you have loads more information and could use a place to share it.
I would imagine that the site could also house a place for information about
other related diseases/disorders that often tag-along with it as well as some information about
some of the procedures that have been done/researched to help resolve symptoms of this.
The less people have to go off of, the scarier something can be; and the reverse can also be true if there's nothing but a big black hole devoid of hope. But, if you don't know what you have (other than a name), how can you have hope?
Thanks,
DudeSerius