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Old 06-19-2003, 10:55 AM   #1
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neckpain HB User
Post OPLL: ossification of the posterior longitudinal ligament

Hi Everyone,

I am new to this forum and would like to hear from anyone who has OPLL, or ossification of the posterior longitudinal ligament. OPLL is a rare spinal cord disease and is usually found in Asians more often than Caucasians. It seems to be genetically caused but there is also some research on nutritional causes. I was recently diagnosed with OPLL of the cervical spine and two neurosurgeons have recommended surgery to decompress my cervical spinal cord. One surgeon advises to have a laminectomy and fusion from C2-C7, and the other surgeon recommends just a laminectomy without fusion (he said research has proven that 94% of patients who have just laminectomies do fine without fusion and don't experience any instability in their cervical spine after surgery).

My OPLL is apparently severe and is causing numbness and tingling in my left arm and hand, and my left foot and leg. The surgeons have told me that I should have surgery as soon as possible. To delay would risk further progression of the OPLL and will cause weakness and possible paralysis.

I've read several journal articles about OPLL and the risks of surgery, and I'm feeling very anxious about proceeding with surgery. I am hoping that someone will respond to this posting and let me know if surgery helped his/her OPLL, and if there were any side effects or problems from the surgery.

One Unlucky Caucasian

 
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Old 06-19-2003, 12:21 PM   #2
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Location: cape cod MA
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need2fuse HB User
Post

welcome on in,
not in your situation, but would like to say that if you can find an awesome doc that will do the laminectomy go for it.... wow to be fused that much could leave you an unhappy guy.

sue

------------------
L5 fused early 80's for spondylolisthesis
2 level acdf 6/2000
repair torn labrum 7/2000
shoulder impingement 5/2003
results are in, the fusion never fully healed. =/
Surgery Set for June 27th
__________________
L5 fused early 80's for spondylolisthesis
2 level acdf 6/2000
repair torn labrum 7/2000
shoulder impingement 5/2003
results are in, the fusion never fully healed. =/
revision and an overhaul surgery set for June 27th

 
Old 06-26-2003, 12:11 PM   #3
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neckpain HB User
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Dear Sue,

Best of luck to you with the surgery. You sure have had your share of problems with your back. Hopefully, this surgery will be your last!

Jan
OPLL: ossification of the posterior longitudinal ligament of the cervical spine

 
Old 12-10-2003, 02:48 PM   #4
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neckpain HB User
OPLL, ossification of the posterior longitudinal ligament

[FONT=Arial]
Is there anyone else in this group who has been diagnosed with OPLL, ossification of the posterior longitudinal ligament (cervical spine)? I've was diagnosed with OPLL last Dec. and am facing surgery on Feb. 2nd. My neurosurgeon will do a laminectomy and fusion of my cervical spine from C3 to T1. OPLL compresses the spinal cord and causes numbness and tingling in the extremities. It can progress and damage the spinal cord causing paralysis. Surgery seems to be the only treatment for this rare condition. I have read about the risks of this surgery and would like to locate another person who has this rare disease of the spinal cord. I would appreciate hearing from anyone who has OPLL, or has knowledge about cervical laminectomies and fusion.

Happy holidays to all,

Jan
San Carlos, CA

 
Old 12-13-2003, 07:21 PM   #5
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moondancer659 HB User
Re: OPLL, ossification of the posterior longitudinal ligament

Quote:
Originally Posted by neckpain
[FONT=Arial]
Is there anyone else in this group who has been diagnosed with OPLL, ossification of the posterior longitudinal ligament (cervical spine)? I've was diagnosed with OPLL last Dec. and am facing surgery on Feb. 2nd. My neurosurgeon will do a laminectomy and fusion of my cervical spine from C3 to T1. OPLL compresses the spinal cord and causes numbness and tingling in the extremities. It can progress and damage the spinal cord causing paralysis. Surgery seems to be the only treatment for this rare condition. I have read about the risks of this surgery and would like to locate another person who has this rare disease of the spinal cord. I would appreciate hearing from anyone who has OPLL, or has knowledge about cervical laminectomies and fusion.

Happy holidays to all,

Jan
San Carlos, CA
hello Jan I have something very similar I think I have from C2-C7 herinated and C2 bulging into the spinal column about half way but he said that i need the first op a antierior disketomy and fusion for C2 and C3 then for the second a lamiendety mass level fusion from C3 to C7 because of the calicifaction that is going into the spinal column the first is secheduled for jan but even my regular doc said i need to go for a second opion to see if there is any other way.
jeannine

 
Old 12-13-2003, 08:27 PM   #6
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Location: STATEN ISLAND, NEW YORK
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NYFUSED HB User
Re: OPLL, ossification of the posterior longitudinal ligament

hi neckpain,
great name!!!
I have never heard of OPLL, but have had both surgeries you are aksing about. I had acdf c5-6-7 in 10/2002 and I had the posterior laminectomy c6-7 in 6/2003. I am sorry to say but neither of them provided any relief for my pain. The surgery itself is not that bad in regard to pain. The first 2-3 days they keep you on pain meds and gradually it gets better. If you have any specific questions, feel free to ask away....

Good luck
Lori

lamiectomy L4-5 2001
ACDF C5-6-7 10/2002
POST. LAMI-FORAMINOTOMY C6-7 2003

UPCOMING SURGERIES
2/25/2004 REVISION SURGERU ACDF C5-6-7 WITH NEW PLATE AND INTERBODY CAGES AND ACDF C4-5

 
Old 12-14-2003, 07:00 AM   #7
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Join Date: Dec 2003
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Posts: 24
srivito HB User
Re: OPLL, ossification of the posterior longitudinal ligament

Hi,

I have never heard of OPLL, but I had a herniation of c5/6 and c6/7 and both discs were completely calcified and pushing into the spinal cord. Not sure if we had the same thing. I had surgery within a month to remove the herniations and fuse everthing between c5-7. Everything was fine until a couple months ago and now c 4/5 is herniated and pushing into the spinal cord. Not calcified yet (as I understand it, calcifications take years to happen). I would always recommend a second opinion to someone. As others have said, once you fuse, you'll always be fused. It's permenant.

Best of luck to you,

Sue

 
Old 12-16-2003, 01:06 PM   #8
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Join Date: Jun 2003
Posts: 10
neckpain HB User
Re: OPLL, ossification of the posterior longitudinal ligament

Quote:
Originally Posted by moondancer659
hello Jan I have something very similar I think I have from C2-C7 herinated and C2 bulging into the spinal column about half way but he said that i need the first op a antierior disketomy and fusion for C2 and C3 then for the second a lamiendety mass level fusion from C3 to C7 because of the calicifaction that is going into the spinal column the first is secheduled for jan but even my regular doc said i need to go for a second opion to see if there is any other way.
jeannine
Hi Jeannine,

Thanks for replying! I would certainly get a second opinion from a neurosurgeon. Calcification can occur at any level of the spinal cord. In my case, the OPLL is continuous from C2 to T1 and is severely compressing the spinal cord. The calcification is apparently caused by ossification of the ligament that runs up and down the spine. The ossification is caused by abnormal calcium metabolism. There is no cure or treatment for this condition other than surgery. And I have read that surgery doesn't always help. My dr. wants to do a laminectomy from C3 to T1 and fuse all the vertebrae. This is a posterior approach to the spine and involves removing the lamen (the spiny part of the vertebrae) so that the spinal cord can move away from the calcified ligament. I hope that you can get a more exact diagnosis from a specialist, and I hope that you don't have OPLL. OPLL is a rare condition that is found more frequently in Asians. I'm not Asian but Caucasians can have this condition too. Please let me know how your surgery goes, if you decide to go ahead with it. I wish you the very best........Jan in San Carlos, CA

 
Old 12-16-2003, 01:11 PM   #9
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Posts: 10
neckpain HB User
Re: OPLL, ossification of the posterior longitudinal ligament

Quote:
Originally Posted by srivito
Hi,

I have never heard of OPLL, but I had a herniation of c5/6 and c6/7 and both discs were completely calcified and pushing into the spinal cord. Not sure if we had the same thing. I had surgery within a month to remove the herniations and fuse everthing between c5-7. Everything was fine until a couple months ago and now c 4/5 is herniated and pushing into the spinal cord. Not calcified yet (as I understand it, calcifications take years to happen). I would always recommend a second opinion to someone. As others have said, once you fuse, you'll always be fused. It's permenant.

Best of luck to you,

Sue
Hi Sue,

Yes, I've gotten a second and third opinion and both doctors recommended the surgery, sooner than later. OPLL is a progressive disease and can cause paralysis. I have a question about your fusion. Has it limited your mobility at all? Are you able to drive? My fusion will be so extensive (C3 to T1) that I'm worried I'll be so limited. My dr. said that it will be difficult for me to look up or down but I will be able to move my head from left to right. UGH! I'm not looking forward to this but am resigned to the necessity of the surgery.

Thanks for your response and Happy Holidays to you!

Jan
San Carlos, CA

 
Old 12-16-2003, 01:20 PM   #10
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Join Date: Jun 2003
Posts: 10
neckpain HB User
Re: OPLL, ossification of the posterior longitudinal ligament

Quote:
Originally Posted by LORIRAT
hi neckpain,
great name!!!
I have never heard of OPLL, but have had both surgeries you are aksing about. I had acdf c5-6-7 in 10/2002 and I had the posterior laminectomy c6-7 in 6/2003. I am sorry to say but neither of them provided any relief for my pain. The surgery itself is not that bad in regard to pain. The first 2-3 days they keep you on pain meds and gradually it gets better. If you have any specific questions, feel free to ask away....

Good luck
Lori

lamiectomy L4-5 2001
ACDF C5-6-7 10/2002
POST. LAMI-FORAMINOTOMY C6-7 2003

UPCOMING SURGERIES
2/25/2004 REVISION SURGERU ACDF C5-6-7 WITH NEW PLATE AND INTERBODY CAGES AND ACDF C4-5
Hi Lori,

Wow! What a medical resume! I am sorry to hear that your surgeries didn't provide the relief you have hoped for. This is my fear as well. My dr. said that my surgery would take about 5-6 hours and I will be in the hospital about a week. Recuperation could take 2 months or more due to the severe case of OPLL. The risks of surgery (infection and possible paralysis) scare me. Nevertheless, I'm resigned to having the surgery because this condition is progressive. I have some questions........were you experiencing numbness and tingling before you had surgery? What do you do for the pain now? Are you able to drive and do all of the things you used to do?

I appreciate your response and wish you a Merry Christmas!

Jan, San Carlos, CA

 
Old 12-16-2003, 02:51 PM   #11
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Join Date: Dec 2003
Location: Syracuse, NY
Posts: 24
srivito HB User
Re: OPLL, ossification of the posterior longitudinal ligament

Hi Jan,

I only have a two level fusion--I really didn't notice too much reduction in mobility. As I understand it, most of our head movements (left and right,) come from c1/2 and there isn't a disc there (thank God!!!). Best of luck with your surgery--I know there are others on this board that are fused exactly where you are getting fused; they will be better able to answer the mobility question. I'm sure that your quality of life will be much better after the surgery--even with lessened mobility. Spinal cord compression is not a good thing and obviously you have to get it taken care of. Just think---just 60 years ago we all would have been in a LOT of trouble with all this spine stuff. I can't imagine having all these symptoms but not being able to do anything about it. It's amazing to think where we'd be without MRI's CT scans etc....

Best wishes,

Sue

 
Old 12-16-2003, 06:03 PM   #12
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Posts: 43
guynnm HB User
Re: OPLL, ossification of the posterior longitudinal ligament

Quote:
Originally Posted by neckpain
Hi Jeannine,

Thanks for replying! I would certainly get a second opinion from a neurosurgeon. Calcification can occur at any level of the spinal cord. In my case, the OPLL is continuous from C2 to T1 and is severely compressing the spinal cord. The calcification is apparently caused by ossification of the ligament that runs up and down the spine. The ossification is caused by abnormal calcium metabolism. There is no cure or treatment for this condition other than surgery. And I have read that surgery doesn't always help. My dr. wants to do a laminectomy from C3 to T1 and fuse all the vertebrae. This is a posterior approach to the spine and involves removing the lamen (the spiny part of the vertebrae) so that the spinal cord can move away from the calcified ligament. I hope that you can get a more exact diagnosis from a specialist, and I hope that you don't have OPLL. OPLL is a rare condition that is found more frequently in Asians. I'm not Asian but Caucasians can have this condition too. Please let me know how your surgery goes, if you decide to go ahead with it. I wish you the very best........Jan in San Carlos, CA
Hi:
I had a similar problem and had surgery Dec 1. I had herniated diiscs at C4, C5, C6 and C7. I also had osteophytes and spurs pressing into spinal cord and spinal cord compression at all these levels. I had severe tingling and pins and needles in my hands, and feet and had started to progress up my legs and arms. I work for neurosurgeons and one of the best at cervical and back surgeries in the country is in our group.He did my surgery. It took a little over 8 hours. I had a cervical ACD&F at three levels and a cervical corpectomy at two levels with fibular strut graft and Premier plating. He said he picked pieces of bone out for a couple of hours. My surgery was pretty extensive but I did well and am now two weeks post op. The first few days are pretty miserable but survivable. I still have occasional muscle spasms in the back of my neck and shoulders and down one arm which they say is from the positioning in surgery for so long. Surprisingly my swallowing was effected only for about four days and now is back to normal. I will have to be in this Miami J collar for 2-3 months ugh, ugh, ugh. I also wear a bone growth stimulator for 3 hours per day. I go for first check up tomorrow. Now we just wait and pray it fuses. Don't know if all this rambling helped you or not. Hope so.

Mary

 
Old 12-18-2003, 07:27 AM   #13
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guynnm HB User
Re: OPLL, ossification of the posterior longitudinal ligament

Quote:
Originally Posted by guynnm
Hi:
I had a similar problem and had surgery Dec 1. I had herniated diiscs at C4, C5, C6 and C7. I also had osteophytes and spurs pressing into spinal cord and spinal cord compression at all these levels. I had severe tingling and pins and needles in my hands, and feet and had started to progress up my legs and arms. I work for neurosurgeons and one of the best at cervical and back surgeries in the country is in our group.He did my surgery. It took a little over 8 hours. I had a cervical ACD&F at three levels and a cervical corpectomy at two levels with fibular strut graft and Premier plating. He said he picked pieces of bone out for a couple of hours. My surgery was pretty extensive but I did well and am now two weeks post op. The first few days are pretty miserable but survivable. I still have occasional muscle spasms in the back of my neck and shoulders and down one arm which they say is from the positioning in surgery for so long. Surprisingly my swallowing was effected only for about four days and now is back to normal. I will have to be in this Miami J collar for 2-3 months ugh, ugh, ugh. I also wear a bone growth stimulator for 3 hours per day. I go for first check up tomorrow. Now we just wait and pray it fuses. Don't know if all this rambling helped you or not. Hope so.

Mary
Jan:

UPDATE: I got a copy of my operative note yesterday. I did have OPLL. after they did my vertebrectomies and discectomies, they decompressed the spinal cord more by removing as much of the calcification from the posterior logitudinal ligament as they could. My numbness and tingling are much improved. Not completely gone but livable now, and yes your problem is progressive and my doc said I would end up unable to use my hands and be in a wheelchair eventually.
Keep me updated.
Mary

 
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