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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KilkennyRose | @kilkennyrose | Aug 19, 2011

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.

REPLY
13 replies
langteach | @langteach | Aug 23, 2011
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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My surgery went well with several fusings and a great amount of bone overgrowth clean out. You must be recovering from your procedure by now. After just a few days home, I am pain free. My shoulders ache a bit in this cervical collar, but I feel great. I am sleeping better than I have in years. We seem like kindred souls with this unusual condition of bone growth. Please write when you have time. Blessings to you in your recovery.

REPLY
1 reply
KilkennyRose | @kilkennyrose | Aug 25, 2011
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

Thanks. Yes, I am home now. Came home about 24 hours after coming out of anesthesia. I think I am doing remarkably well. The pain in my shoulder is much reduced. The pain in my neck is gone. Well I have different pain from the surgery of course. The worst problem is that it hurts to swallow. Feels like a lump in my esophagus half way to my stomach. I found out the hard way this afternoon that I have to chew my food very thoroughly or it can't go down. I am really thrilled with how the surgery went, even tho it took twice as long as he predicted. He did a very thorough job of getting the worst lump out. He ended up using a plastic graft instead of donor bone because the gap was too large. He took half or less of each vertebrae as well as the disc. He put a titanium plate in and he said he was able to screw it very securely to the bone on each side. Therefore I am no longer at an increased risk of quadriplegia from a fall or car accident. I can hardly express what a relief that is. I'm sure u understand better than people who haven't had that threat. I'm glad I just had single level fusion. Let's keep in touch. There are so few of us with it that it feels isolating. Hope your recovery continues to go well.

REPLY
langteach | @langteach | Aug 25, 2011
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

The swallowing issue is one that lasts a few days. I discovered that Boost and Ensure gave me a good meal on those days when the esophagus was still very bulky and swollen. Try to get fresh pineapple if possible as it seems to help the incision heal right up. You sound as though you are doing well. I hope that you have someone prepared to feed you well as this is not a time to count calories. My doctor will see me on 8/29 to inspect my incision. I have not seen him since the 14th, so it will be good for him to lay eyes on my 7 inch site. I am so happy that you are doing well so far. Rest a lot and be careful. I will keep in touch after my appt. Really wonder when I will be cleared to go back to teaching. I am just glad to be able to feel safe to walk around without worry of injury. It is a great feeling.

REPLY
KilkennyRose | @kilkennyrose | Aug 25, 2011
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

Thanks for the advice. It means a lot from one who's been there. I'll add pineapple to the shopping list. I have type 2 diabetes so I have to watch the carbs and the nurse from my health insurer just said eat lots of protein for healing. I was fairly active around the house off and on all day but haven't gotten any regular walks in. I'll try to do that tomorrow.

REPLY
KilkennyRose | @kilkennyrose | Aug 29, 2011
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've been in the hospital since Sat. treating pain, sleep prblms. I prob. overdid it even tho didn't seem too much. This way i get ice packs, tlc, pain meds etc. on scched. plus food easy to eat. swallowing a real problem

REPLY
KilkennyRose | @kilkennyrose | Sep 2, 2011
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'm not sure if you saw my previous post. If I reply to my own reply, do you see it too? Anyway, I am finally about to go home after 7 days in the hospital. I will have lots to say when I am better.

REPLY
langteach | @langteach | Sep 3, 2011
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 did not see your last post until today. I thought that you were home and doing well. Did you just miss the hospital food or did they send you home too soon the first time? Hope you are feeling MUCH better now. Be sure to take care so that you can heal correctly. If you get lots of sleep it seems to facilitate healing. Saw my Dr. for my 3 week post-op check. He said that I am doing fine but need to wear the cervical collar for 3 more weeks and then go to physical therapy. I plan to go back to work on 9/8, but I seem to have less energy as time goes by. Please keep in touch when you get time. Blessings and best wishes to you!
Debbie

REPLY
KilkennyRose | @kilkennyrose | Sep 7, 2011
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 went back in because i was concerned primarily with my lack of sleep. I was sure i was experiencing sleep apnea aggravated by the narcotics. There was also concern about my incision. I think we had another concern besides. I couldn't get hold of my surgeon, so I went to the ER of the hospital where I had the surgery since they would have all the records.. They were concerned enough to hold me overnight for observation, then admitted me the next day back to the neuro ward. It turned into a nightmare of misdiagnoses, poor communication between shifts, miscommunication between doctors and nurses and more, losing vital pieces of my health information from their electronic record system, failure to document my sleep apnea and at the end poor treatment from some of the nurses and especially the discharge nurse. I acquired thrush while I was there, which multiplied my pain and misery ten fold. So now I am back to where I was a couple of days post-surgery.

REPLY
langteach | @langteach | Sep 7, 2011
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 too have sleep apnea and use a cpap machine(5 yrs). Did you know about your apnea before the surgery? My hospital was unable to hook me up to my machine while I was there due to the bulky cervical collar, so they just ignored my need for the machine. When I returned home, I had to request a different mask to be able to even use the cpap. I was able to sleep due to the pain killers, but I too was worried over choking/gasping while deeply asleep. The mask slips off sometimes while I sleep, but I feel much better about my sleep quality. I went a week w/o the cpap, and that was not good. Is your incision doing ok now? Sounds like you had a terrible time on your return trip to the hospital. My incision is red and thick, but I hope that it gets better with time. It looked great just after the steri-strips came off, but now it looks very new and irritated. Please know that you are in my prayers and that I wish the best recovery possible for you and your family.

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