1. < Spine Health

Does anyone have DISH and/or OPLL?

Posted by langteach @langteach, Aug 5, 2011

After a recent MRI and CT, I have been diagnosed with DISH and OPLL of the cervical spine. These conditions mean that I have large flowing osephytes on one side of my spine and tendons turning into abnormal bone on the other side of my spine. The doctor wants to complete a multi-level fusion from C-3 to T-1 in a few days. Could anyone comment on the recover from multi-level fusions of the cervical spine? I worry about becoming disabled or paralyzed. I am a schoolteacher and deal with 13 yr old students.
Thank you for any advice.

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langteach | @langteach | Mar 27, 2012
In reply to @kilkennyrose "I have OPLL. I'm not sure about DISH. I don't remember it being mentioned, but I..." + (show)
@kilkennyrose

I have OPLL. I'm not sure about DISH. I don't remember it being mentioned, but I might have been in a fog. I went from thinking I had a minor but annoying shoulder problem to finding out I had a rare condition that required almost immediate surgery to avoid becoming quadriplegic. I have it at several levels, but the worst is c4-c5 where the arm nerves come out. I will have surgery next week, finally, after a couple of tense weeks getting clearance from the cardiologist because of aortic stenosis, which is caused by calcification of the valve. It's not clear now whether I was born with a bicuspid valve which was worsened by calcification, or if it was normal and then fused with calcification. I am going to an endocrinologist at the end of the month to see if all this calcification has a root cause. I have found very few people on line with this disease, but there are a few at Inspire.com. Check them out. There are some encouraging reports about recovery.

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It has been months since we wrote, so I wanted to see if we could catch up a bit. What has been going on with you since September? I went back to work after my 5 level fusion. Please write if you have any further interest. Blessings!
Debra Manning
727.398.2859-call anytime

REPLY
KilkennyRose | @kilkennyrose | Mar 28, 2012
In reply to @kilkennyrose "I have OPLL. I'm not sure about DISH. I don't remember it being mentioned, but I..." + (show)
@kilkennyrose

I have OPLL. I'm not sure about DISH. I don't remember it being mentioned, but I might have been in a fog. I went from thinking I had a minor but annoying shoulder problem to finding out I had a rare condition that required almost immediate surgery to avoid becoming quadriplegic. I have it at several levels, but the worst is c4-c5 where the arm nerves come out. I will have surgery next week, finally, after a couple of tense weeks getting clearance from the cardiologist because of aortic stenosis, which is caused by calcification of the valve. It's not clear now whether I was born with a bicuspid valve which was worsened by calcification, or if it was normal and then fused with calcification. I am going to an endocrinologist at the end of the month to see if all this calcification has a root cause. I have found very few people on line with this disease, but there are a few at Inspire.com. Check them out. There are some encouraging reports about recovery.

Jump to this post

Sure. We opllers are so few we have to stick together, right? I'm all healed from the neck surgery, but just had open heart surgery 3 weeks ago. The tests to prepare for the neck surgery revealed that my aortic valve had gotten much worse, but wasn't quite bad enough to prevent the neck surgery. 6 months later it had gotten so much worse it was almost in critical status. I learned things from my previous hospital stay, plus I was in a different hospital, so this hospitalization was not a problem. I'll probably be home another 3-5 weeks.

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langteach | @langteach | Mar 28, 2012
In reply to @kilkennyrose "I have OPLL. I'm not sure about DISH. I don't remember it being mentioned, but I..." + (show)
@kilkennyrose

I have OPLL. I'm not sure about DISH. I don't remember it being mentioned, but I might have been in a fog. I went from thinking I had a minor but annoying shoulder problem to finding out I had a rare condition that required almost immediate surgery to avoid becoming quadriplegic. I have it at several levels, but the worst is c4-c5 where the arm nerves come out. I will have surgery next week, finally, after a couple of tense weeks getting clearance from the cardiologist because of aortic stenosis, which is caused by calcification of the valve. It's not clear now whether I was born with a bicuspid valve which was worsened by calcification, or if it was normal and then fused with calcification. I am going to an endocrinologist at the end of the month to see if all this calcification has a root cause. I have found very few people on line with this disease, but there are a few at Inspire.com. Check them out. There are some encouraging reports about recovery.

Jump to this post

I wish you the very best in your recovery.

REPLY
jessieanderson | @jessieanderson | Mar 19, 2013
In reply to @kilkennyrose "I have OPLL. I'm not sure about DISH. I don't remember it being mentioned, but I..." + (show)
@kilkennyrose

I have OPLL. I'm not sure about DISH. I don't remember it being mentioned, but I might have been in a fog. I went from thinking I had a minor but annoying shoulder problem to finding out I had a rare condition that required almost immediate surgery to avoid becoming quadriplegic. I have it at several levels, but the worst is c4-c5 where the arm nerves come out. I will have surgery next week, finally, after a couple of tense weeks getting clearance from the cardiologist because of aortic stenosis, which is caused by calcification of the valve. It's not clear now whether I was born with a bicuspid valve which was worsened by calcification, or if it was normal and then fused with calcification. I am going to an endocrinologist at the end of the month to see if all this calcification has a root cause. I have found very few people on line with this disease, but there are a few at Inspire.com. Check them out. There are some encouraging reports about recovery.

Jump to this post

Good luck to you!!!

REPLY
raileht | @raileht | Feb 8, 2016

Does anybody know about OPLL? My partner had it when he was only 28 and they performed surgery on spine. This is something that affects mostly people from ages 60 and up or people who were in an accident. Not him, he's young and he never went through any sort of accident. They took things out from his spine and replaced them with rods--there's a scar from his nape to the top of his back. I'm not finding much literature online. Please help? I can't help but be scared for knowing so little. He's 33 now and I'm terrified of losing him. Does anybody have any idea what I need to watch out for? God, or if this even has a specific life expectancy?

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3 replies
Anonymous-90348 | @anonymous-90348 | Feb 8, 2016

Hi @raileht, and welcome to Connect.

Indeed ossifcation of the posterior longitudinal ligament is rare in someone so young, but not unheard of. OPLL is twice as common in men than women and higher incidence in the Asian/Japanese population.

You'll notice that I moved your message to this discussion thread where you'll meet @kilkennyrose @langteach @jessieanderson. It's been a while since they posted to Connect, but I hope they will return to help answer your questions.

Cassie
Connect Community Moderator

REPLY
langteach | @langteach | Feb 8, 2016
In reply to @raileht "Does anybody know about OPLL? My partner had it when he was only 28 and they..." + (show)
@raileht

Does anybody know about OPLL? My partner had it when he was only 28 and they performed surgery on spine. This is something that affects mostly people from ages 60 and up or people who were in an accident. Not him, he's young and he never went through any sort of accident. They took things out from his spine and replaced them with rods--there's a scar from his nape to the top of his back. I'm not finding much literature online. Please help? I can't help but be scared for knowing so little. He's 33 now and I'm terrified of losing him. Does anybody have any idea what I need to watch out for? God, or if this even has a specific life expectancy?

Jump to this post

Dear raileht,
As you can see from the dates of my previous posts from 2011, my interaction with OPLL and DISH happened awhile back. Don't know if I can help you, but you are right that there is very little info out there to use for education. After my 5 level fusion in 2011, I have healed well and gone on to an Advil-free life. Before the fusion, I lived on ibuprofen and heat wraps for my neck. I do not anticipate further issue with my neck, but I do worry about the rods and pins in my neck wearing out before I die. BTW, this is the same surgery that Peyton Manning had on his neck and he just won the 50th Super Bowl yesterday! He had 4 procedures and more than one fusion per procedure. This condition can be corrected, but for a young person, there will always be concern about a fall and break. I have NO issues at all, and my case was 'one for the ages' or so my doctor told me at the time. I must have an xray every year to check on my titanium rods and screws, but that is all my follow-up requires. Hope this helps. OPLL just means that there is an abnormally great amount of bone overgrowth near the spine. Sometimes no action is taken, sometimes you have a surgery to fix it. I am fine and with continuing care by a doctor, your partner should be great too.

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Anonymous-90348 | @anonymous-90348 | Feb 9, 2016

@lanteach, welcome back to Connect! Thanks so much for sharing your experience with @raileht. Very happy to hear you're doing so well!

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Kanaaz Pereira, Connect Moderator | @kanaazpereira | May 14, 2017

Hello @sherry54,

Welcome to Connect.
Ossifcation of the posterior longitudinal ligament or OPLL is quite a rare condition. Could you tell us a little more about yourself? For instance, what are your symptoms, and how were you diagnosed? Are you undergoing any treatment for OPLL?

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