[rhondaroo]

hi everyone I am new,

I just had my first visit with neurosurgeon. He said I have OPLL but he is not too concerned with that right now. I am going to need surgery but we agreed to try cortasone shots first. I have DDD, Spinal Canal Stenosis, c5/c6 and c6/c7 it is deforming my spinal cord no visuable fluid around it. He said the cord is functioning fine so we can wait and montitor it. I have all the other fun stuff arthritis spurring four diffused disc and foraminal stenosis at multiple levels.

I broke my thoracic 23 years ago so I know what real pain is. Mine is still managable so I am wanting to hold off any surgery. Any thoughts? I have intermitant bilateral arm pain and pins and needles in my middle fingers sometimes other too. Both my hands stay tingly/ numb most all the time. Neck and back aches all the time but not severe.

I would really like to hear from anyone else who may have OPLL or input if I making the right discission.

Thanks
Rhonda

[Leesa]

Hi Rhonda =-- I'm sorry I'm so ignorant, but what IS OPLL?? I don't have a clue!!!

[rhondaroo]

Leesa,

I had never heard of it either. When I looked it up on the internet it says it uncommon. Mostly seen in asian males over 60. 2 to 1 more common in men than women. I am caucasian and female. the posterior ligament runs between the vertabrae and the spinal cord I think. The ligament hardens and inlarges and starts forming particals of bone inside the ligament putting pressurd on the cord. There is not too much info on it. Mine is mild in the cervical right now. I think they should of done an mri of my thoracic too to see if it continues there. Apparently if I am not wrong the surgery is pretty dangerous and doesnt alway have great results. I might be worried for nothing since the doctor didnt seem worried about it. I am just wondering if he is right or I should push harder for a CT or MRI of my whole back where the ligament runs.

Rhonda

[Leesa]

If you're not Asian, and it usually is in males, then I think he's NUTS. I would get another opinion with another NEUROSURGEON. I doubt you have this AT ALL.

Take your MRI of the cervical and go to another Neurosurgeon and see what he says. I'm sure you're going to get another diagnosis. And this time it will make more sense. I don't know what's wrong with the first guy, but something's clouding his judgment. Either he's too old, or he's on something. LOL But I seriously doubt this is what you have.

So get another opinion and forget the first one. I wish you the very best. And PLEASE let us know what the next Neuro says, will you? God bless and take care. Hugs, Lee

[rhondaroo]

Leesa


I will get a second opinon. It says it on my mri results too. Thanks

Rhonda

[Neurochic]

No offence to Leesa but I am also white and female and have OPLL so whilst it may be relatively rare, its not unheard of.

It was picked up when I had a brain and cervical spine MRI 4.5 years ago in connection with severe movement disorder conditions that I have.

I was actually slightly symptomatic for a couple of years before the MRI but the symptoms were so minor that they barely bothered me. They are worse now but still not bad enough for me to bother going back to have further testing or treatment. I also haven't bothered seeking further MRI scans to see how far down my spine the OPLL may be present.

I have discomfort and sometimes a bit of pain in my neck but the biggest practical problem is that I have a very limited ability to turn my head to the sides, to move my head up and down or to drop my head down to the sides towards my shoulders. It's worse when I try to turn to the right - my movement is extremely restricted. It's restricted to the left but its not as bad.

I have so many other problems that I just live with the OPLL. It can progress extremely slowly and never become a problem so don't assume it's going to need surgical intervention. It can also progress a very long way before it becomes symptomatic. Unless you have absolutely no other option, I think it is best not to bother with surgery.

By all means seek a second opinion but don't assume the diagnosis is wrong just because the research indicates its not common in women and white people.

[Leesa]

Hi Neurochic ~ Exactly what IS OPLL -- is it a tumor, or what? Like I said, I've never heard of it, and the information on it is hard to find!

Can you help?

[Neurochic]

OPLL - ossification of the posterior longitudinal ligament.

It is a spinal ligament which runs down the back (posterior) of the spine inside the vertebral column.

Essentially, the ligament starts to ossify or convert to bony material. Eventually in some cases, the bone formed will actually produce bone marrow. The ossification can be fairly localised or it can run the length of the whole ligament.

There are multiple dangers of the condition. The bony growth takes up additional space in the spinal canal and as it grows and takes up more space, it can eventually cause compression of the spinal cord. Usually a laminectomy and removal of the bony tissue is the only option if this happens and the symptoms become too serious to leave it. Worse though is the risk that the presence of this hard, bony material next to the spinal cord means that even a very minor bump or trauma can cause the bony material to slice through the spinal cord. There is obviously no return from that kind of injury, where the cord is cut, there will be some degree of permanent paralysis depending on the extent and location of the damage.

Even if neither of these things happen, it can cause pain, limited movement and so on. Some people are not symptomatic even when there is significant ossification and compression, others are symptomatic with very little ligament change.

Hope that helps to explain.

[Leesa]

My gosh, that is really scary. I've not heard of this condition until rondaroo spoke of it. This must be quite rare, because I've been on spinal sites since 1998, and NO ONE I've talked to has EVER had anything like this and I've talked to thousands of people!!!

Does it have anything to do with osteoarthritis or don't they know?

Thank you so much Neurochic -- I've saved your info so I have it for further reference. You explained it so clearly, that if I looked it up in journals, I'd NEVER understand it. LOL I really appreciate your explaining it to me. Thank you so much! Take care & God bless.

[Neurochic]

You are welcome. Yes it is considered to be very rare, although less so in certain nationalities so much of the research and information comes from other countries. It doesn't seem to be considered to have anything to do with arthritis.