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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sherry54 | @sherry54 | May 30, 2017
In reply to @langteach "My surgery was almost 6 years ago, so I am rusty on some of it. The..." + (show)
@langteach

My surgery was almost 6 years ago, so I am rusty on some of it. The fusion was C-2 to C-6. The procedure was anterior with a 7 inch scar. I saw the x-rays and two plates and 4 titanium screws were affixed to my spine. I was cautioned that I might be paralyzed after the procedure, and I signed multiple papers stating that I would not sue the Dr/hospital. After the surgery I was in the hospital for 5 days, they told me it was usually one day of recovery for each level fused. The truth was that I was scared to death that I wouldn't be able to turn my head or wipe my bottom. I was so relieved when I woke up and felt no pain. The large amount of steroids gave me a feeling of invincability all 5 days. Until I got home and off the steroids I had a very clear belief that I was healing perfectly. My husband and I were so amazed by my change of attitude after I got home. The head/neck brace kept me from being able to use my cpap machine so for the 5 days I was afraid to fall asleep. Not sure how the hospital could just decide to ignore my requests for cpap, but they sure did. We had so much going on with my blood sugar that I decided to pick my battles. Like I mentioned in another post, the steroids caused my blood sugar to soar up and over 200! The scar took much longer to heal because my blood sugar was sky high. To tell you the truth though, I was so concerned about getting back to teaching that I managed to kind of compartmentalize my fears. My principal called most every day and asked when I might be back at work and that he couldn't find subs easily. I told him that after 15 years teaching that I was going to use every sick day that was needed to heal carefully. All total I was out 3.5 weeks and wore the metal cervical brace for 6 weeks.

Once back at work I had to have students lift and carry texts for me the rest of the year. I now have a case of foot drop with my right leg and I could trip over anything. The surgery was in August 2011 and by January I felt completely healed and happy. I could drive and back my car out of a parking space and my use of ibuprofen dropped to zero. The bathroom issues that I feared would end my teaching job did not materialize.

Fast forward to December 2016. I am retired, 61 and not very active at all. My biggest activity is to do laundry or mow the teeny yard. My thoracic area started aching most every night, so I asked my primary care doctor what was good for the pain. He prescribed Voltaren Gel which is diclofenac sodium. I use it morning and night and then again at lunch if needed. The stuff is ibuprofen gel and I am a real fan. It seems to help my psoriatic arthritis also. I haven't seen my surgeon for a checkup x-ray in 2 years, so I know that I need to go see him. The concern is that he will tell me to get another surgery done, and that is not news that I want to hear. However, if it has to be done, I would do it again. My OPLL is reforming and probably interferring with my spine the doctor said 2 years ago. I consider myself very fortunate to be off all the pain pills that I used to beg for years ago. The pain really pushed me into the procedure. Your situation is causing you a great deal of concern, I am sure. I wish that you can experience less pain and upset. Please be in touch if you want to talk.

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Hi
I know you have been doing well with your surgery. Did you present with any neurological symptoms in your arms or hands?What was the indication for your surgery Could you tell me did you have loss of the cervical curve in your neck?Did you have problem with walking?I know you had problem with urinary retention, and how long was this before surgery?What is wrong with your thoracic spine?Have you OPLL and osteophytes in thoracic spine?You stated your OPLL is returning ,where is this happening?Where are you living and where did you have your surgery?Are you on private medical health insurance?At least you had come a long way after your surgery and can do some things.Good luck with everything.

REPLY
sherry54 | @sherry54 | May 30, 2017
In reply to @hopeful33250 "Hello @sherry54, Thanks for your post. I am so sorry to hear of your rare spinal..." + (show)
@hopeful33250

Hello @sherry54, Thanks for your post. I am so sorry to hear of your rare spinal problems. It sounds like this has been a long standing problem for you and I'm sure that this must be discouraging. As you feel comfortable, please share with us what other treatments (other than surgery) have been available to you. For example, have you been involved in physical therapy or have different meds been tried? Also, have you sought a second opinion regarding the treatment for this rare disorder? We are glad that you have posted your concerns here at Mayo Connect. We look forward to hearing from you again. Teresa

Jump to this post

Hi,
I had seen four surgeons who advised me to have surgery higher up in my neck. Im not keen on it because the previous surgery has left me worse off.Further more all these surgeons are looking at my MRI of the neck and making a decision.I am not a cadaver that they experiment on.This is what i dont understand.Furthermore all these surgeons are known to each other and they are singing from the same hymn sheet.They dont realise how important patient history is in making a decision.They have no idea how i am feeling because they cannot feel for me.I had no idea what condition i had prior to surgery.I only started researching this condition after my surgery.

REPLY
1 reply
sherry54 | @sherry54 | May 31, 2017
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?

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Hi,
I am sorry to hear that your partner has OPLL. Was he also diagnosed with diffuse idiopathic skeletal hyperotosis also called DISH in short. It is uncommon for someone so young to develop OPLL. Do not fear because he is young and age plays an important part in recovery of all surgery.It is a rare genetic degenerative condition of the spine mostly common in the elderly.It is called the Japanese disease and is also common in Asians.A person with OPLL in the cervical spine can present with neurological symptoms in the arms, hands or legs.Some could also present with bladder and bowel dysfunction
due to compression of the cervical spine. OPLL can be local, segmental or continuous.I do not know where on his spine he present with the OPLL.Could you tell me what his signs and symptoms are.Did he see a surgeon.Did he have an xray, bloods and MRI.
Im not sure whether he had his surgery as yet.If he did i would like to know how he is doing.
Good luck!

REPLY
langteach | @langteach | May 31, 2017

Yes, I did have neuro symptoms with tingling and numbness in my arms/wrists. I had tremendous pain on both sides of my neck. For 2 years my ortho had me on 25 mg of elavil each night for the chronic pain that kept me from turning my head much at all. That med really helped me survive the day and still sleep at night. I did have some problems walking(balance, cadence, posture) but that got worse after the surgery. As a matter of fact, I have a recurring nightmare that I am outside trying to walk fast to the corner, but that I am not getting anywhere in reality. It takes me so much effort to get where I am going.I tried riding a bike to build up stamina, but to no avail. I lack energy due to chronic fatigue. Urinary issues started around 6-8 months before the fusion procedure in 2011. Yes, I had a loss of cervical curve in the earliest x-rays years back. That is when I was first told that I had the spine of an 80 yr old at 40. Yes to the flowing osteophytes in the t spine. During the fusions the bone overgrowth was chiseled out and the cadaver bone did not get used as he chose to stick with titanium plates and screws instead. Due to continuing bone overgrowth, evidently the doctor expects me to have more surgery in the future, however I am reluctant to go through the steroids again to recover. Guess I was borderline diabetic for years and never knew. My procedure was at a small specialty hospital in Largo, FL and now I live near Jacksonville, FL so I need to find a neuro surgeon up here. Yes to private medical insurance through my previous employer, the local school board. In a few years I will qualify for Medicare insurance when I turn 65. I wish that I had been more active in these latest years. Been retired 2 years and have become dependent on Netflix and my leather sofa. My advice is to do as much as possible. Not sure if this is pertinent, but I had unusual conditions during my life. Some of my unusual things: mono, pleurisy, toxemia during pregnancy, cellulitis of jaw, cellulitis of breast, psoriatic arthritis, sjogrens, OPLL and DISH
Hopefully my answers to your questions have helped in your research. Take care of yourself.

REPLY
1 reply
sherry54 | @sherry54 | May 31, 2017
In reply to @langteach "Yes, I did have neuro symptoms with tingling and numbness in my arms/wrists. I had tremendous..." + (show)
@langteach

Yes, I did have neuro symptoms with tingling and numbness in my arms/wrists. I had tremendous pain on both sides of my neck. For 2 years my ortho had me on 25 mg of elavil each night for the chronic pain that kept me from turning my head much at all. That med really helped me survive the day and still sleep at night. I did have some problems walking(balance, cadence, posture) but that got worse after the surgery. As a matter of fact, I have a recurring nightmare that I am outside trying to walk fast to the corner, but that I am not getting anywhere in reality. It takes me so much effort to get where I am going.I tried riding a bike to build up stamina, but to no avail. I lack energy due to chronic fatigue. Urinary issues started around 6-8 months before the fusion procedure in 2011. Yes, I had a loss of cervical curve in the earliest x-rays years back. That is when I was first told that I had the spine of an 80 yr old at 40. Yes to the flowing osteophytes in the t spine. During the fusions the bone overgrowth was chiseled out and the cadaver bone did not get used as he chose to stick with titanium plates and screws instead. Due to continuing bone overgrowth, evidently the doctor expects me to have more surgery in the future, however I am reluctant to go through the steroids again to recover. Guess I was borderline diabetic for years and never knew. My procedure was at a small specialty hospital in Largo, FL and now I live near Jacksonville, FL so I need to find a neuro surgeon up here. Yes to private medical insurance through my previous employer, the local school board. In a few years I will qualify for Medicare insurance when I turn 65. I wish that I had been more active in these latest years. Been retired 2 years and have become dependent on Netflix and my leather sofa. My advice is to do as much as possible. Not sure if this is pertinent, but I had unusual conditions during my life. Some of my unusual things: mono, pleurisy, toxemia during pregnancy, cellulitis of jaw, cellulitis of breast, psoriatic arthritis, sjogrens, OPLL and DISH
Hopefully my answers to your questions have helped in your research. Take care of yourself.

Jump to this post

Hi,
Yes you did answer most of my questions.Are you walking with a walking aid.?Do you still have urinary retention or incontinence?Was your bowels affected as well?Are you going to have surgery for your thoracic spine?

Hope you maintain good health. God Bless!

REPLY
sherry54 | @sherry54 | Sep 2, 2017
In reply to @hopeful33250 "Hello @sherry54, Thanks for your post. I am so sorry to hear of your rare spinal..." + (show)
@hopeful33250

Hello @sherry54, Thanks for your post. I am so sorry to hear of your rare spinal problems. It sounds like this has been a long standing problem for you and I'm sure that this must be discouraging. As you feel comfortable, please share with us what other treatments (other than surgery) have been available to you. For example, have you been involved in physical therapy or have different meds been tried? Also, have you sought a second opinion regarding the treatment for this rare disorder? We are glad that you have posted your concerns here at Mayo Connect. We look forward to hearing from you again. Teresa

Jump to this post

HI could you please connect me to someone who had thoracic spinal surgery for OPLL recently

REPLY
Jamie Olson | @jamienolson | Sep 2, 2017
In reply to @hopeful33250 "Hello @sherry54, Thanks for your post. I am so sorry to hear of your rare spinal..." + (show)
@hopeful33250

Hello @sherry54, Thanks for your post. I am so sorry to hear of your rare spinal problems. It sounds like this has been a long standing problem for you and I'm sure that this must be discouraging. As you feel comfortable, please share with us what other treatments (other than surgery) have been available to you. For example, have you been involved in physical therapy or have different meds been tried? Also, have you sought a second opinion regarding the treatment for this rare disorder? We are glad that you have posted your concerns here at Mayo Connect. We look forward to hearing from you again. Teresa

Jump to this post

Hello @sherry54, I see that you have been searching for connections to someone regarding OPLL. I was doing some digging through our logged discussions trying to find someone recently discussing this topic and the only activity was on this thread for DISH and OPLL. I wanted to assure you that we will keep you connected and tag you with any new member that comes looking for discussion.

REPLY
sherry54 | @sherry54 | Sep 6, 2017
In reply to @hopeful33250 "Hello @sherry54, Thanks for your post. I am so sorry to hear of your rare spinal..." + (show)
@hopeful33250

Hello @sherry54, Thanks for your post. I am so sorry to hear of your rare spinal problems. It sounds like this has been a long standing problem for you and I'm sure that this must be discouraging. As you feel comfortable, please share with us what other treatments (other than surgery) have been available to you. For example, have you been involved in physical therapy or have different meds been tried? Also, have you sought a second opinion regarding the treatment for this rare disorder? We are glad that you have posted your concerns here at Mayo Connect. We look forward to hearing from you again. Teresa

Jump to this post

Thank you

sherry

REPLY
doug2018 | @doug2018 | Sep 21, 2018

I just joined this site, I hope Im not to late. I have dish, I was not officially diagnosed until my multi-level surgery of my cervical spine. I had C4-C7 fused on 08/07/18 and am still recovering and doing well. I have painful thoracic issues as well that have not been addressed, I would like to ask you about thorasic procedures as it appears the surgeons I have talked to are apprehensive to operate on the thorasic spine. If you havent had your procedure yet I have additional information for you.

REPLY
langteach | @langteach | Sep 29, 2018

@doug2018, My cervical fusion was in 8/2011. I had a wonderful recovery except for the awful onset of type 2 diabetes from the dozens of steroid shots while in the hospital. The surgeon said not to worry, that my bloodsugar would drop back to normal after the shots stopped. However, he was wrong. My blood sugar soon forced me on to Metformin and a label that changes my life daily. I have not gone back to the surgeon after the follow up visits because my recovery was smoother than I ever imagined. After a few years I now have some tension and pain on one side of my neck, but so far not enough to send me back to the Neurosurgeon. He said that I would need more procedures on down the road, but so far nothing is bad enough to warrant more cutting for me. How is your recovery going for you? I just love being off ibuprophen!

REPLY
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