does anyone else have OPLL

Marcus96910 · 10-08-2013, 11:32 PM

Neurochic posts are Correct!
Unless you want to become 'Incontinent' I suggest you get a second opinion soon.

I'm from Guam and this form of stenosis is not uncommon in Pacific and Asia area. At 46 my doctor discovered i had OPLL and told me the prognosis, partial or full paralysis and incontinent, the second opinion was the same, so I proceeded with the operation. I gotta tell you it wasn't fun, but I'm better now. Your symptoms will only get worst, please take action sooner than later and good luck.

Quote:

Originally Posted by 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

redcat · 10-10-2013, 06:11 PM

Quote:

Originally Posted by 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.

Hi, those symptoms sound very familiar. I have very limited movement of my neck, can barely turn it to the left can turn it a little to the right, can not look up but can look down (with pain ), can not move ears towards shoulder. I also can't lift arms properly, right works better can't get left hand to my head. I can't pick up my feet when I walk I now shuffle when I walk. I have a copy of the mri images of my c spine and lumbar spine which my physiotherapist said were some of the poorest quality he has seen also he thought the slices were to big. I still don't have a diagnosis.
Redcat

ginnie · 10-10-2013, 06:43 PM

It is so good to see your post. Hope you are doing OK. ginnie

Novarian · 10-12-2013, 08:19 PM

Hi All.

I like to share some more. On 10/8/2013, I had the Anterior cervical foraminotomy on (C6-C7) with Dr. Jho. So far it appeared to be successful. As you can see from the previous images of the MRI on my spine, I had the cervical stenosis from C3-C7. But before my first surgery (Endoscopic Posterior Laminectomy without fusion on C3-C6), C6-C7 was not that bad so left out during the surgery. Not sure if it creates any stability issues with Laminectomy but it was not touched the first time. Due to this, I had the pain on the left index and thumb fingers right after the surgery and that continued till 10/8/2013. This is because I had the ossification on the anterior side from c6-c7

I had consulted at least 7 Neurosurgeons before the first surgery and every one cautioned me that no one really understands the behavior of the spine when it is released from several years of compression. It will have some effects but no one knows exactly - like numbness, swelling of fingers, pain the hands etc.

So, I was extremely happy with the first surgery except the pain in the left fingers. More over I had no strength in the left hand too.

The pain in the left hand fingers is all gone with the recent Anterior cervical foraminotomy on (C6-C7). I had very minimal post op pain and could walk right after the surgery. Once I came back to Dallas on the next day, the 3rd day I had the most pain but 4th and 5th days are just fine. I am recovering fast. I did not take any pain medications even though I could have. For me, it changes my system like constipation etc I don't want to take it.

Well, over all my experience with Dr. Jho was great including his 3 PAs. For me, without Dr, Jho, I would have had the Laminectomy with fusion or Laminoplasty with physical limitations on the movements. Now I can move, bend and of course dance if I want to ......

Please let me know if you have any further questions. I will post the MRI after the two months wait on the recent surgery for your reference.

Never feel alone - OPLL can be diagnosed without the plates/fusion

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