Does anyone have DISH and/or OPLL?

Hello,
I have extensive OPLL from C2 till throughout my thoracic spine.Was diagnosed in Sept 2015.Had decompression and fusion from C2-C6 in Nov 2015 cos i had weakness in left leg which made walking difficulty.After surgery im in very poor health.Not walking.Severe pain ,heaviness from nerve damage and parathesia in both arms and shoulders and neck.Weakness worse on left side.Spine is very stiff.Hardly walking.

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

I am a nurse but was asymptomatic.I woke up to go to work and found my left leg heavy and weak at the knee.Mri showed narrowing of cervical spine.Surgery done.Failed to walk.He requested more surgery.I refused.I dont believe that i will walk due to all the compression i have in my thoracic spine and i have extensive OPLL and flowing osteophytes on the right side of spine.I dont trust the surgeon.I think he wants to experiment on me because it is a rare condition.Now i truly believe,if anyone has OPLL like me ,they should let nature take its course.Paralysis is inevitable.I know this is hard to accept.I myself did not accept it.I did not know anything about this condition and was helpless as a child.I expected the surgeon to advise me of the risks, but he took advantage of my vulnerability.I regret the surgery.This applied to me but this will certainly not apply to others who have a mild to moderate form of OPLL.I wish the best for those that are going for surgery soon and those that are recovering

The only treatment i am on is pregabalin for nerve pain.Physiotherapy made me worse.There is no other treatment for me.The surgeon requested occipital-cervical fusion.I refused.

@sherry54 I can certainly understand your reluctance to have spinal fusion surgery. I suppose you have sought a second opinion at a major medical or university center. I wish you comfort and pain control, I'm sure this must be a very difficult diagnosis for you. Are there any support groups for folks with this diagnosis? Keep in touch and let us know how we can support you. Teresa

I was diagnosed with DISH.I did not hear of anyone with OPLL or DISH.I had been doing a lot of research after my surgery and now have loads of knowledge on DISH and OPLL.Do you think the surgeon should have advised me of the risks of my surgery?When i asked him if i could have a look at the MRI,he showed me the narrowing of the spine in the neck and said i will walk after the surgery.Six weeks after the surgery he said i needed to have surgery higher up in my neck because there was more compression in my spine.I cannot trust him now that i have lost the full use of my arms, have severe pain and heaviness in my neck and arms ,and stiffness of my hands and fingers and pain in my shoulders.I never walked and have hyper-extension of my left leg.I have severe compression in my whole spine with OPLL extending from C2-till throughout my thoracic spine. I have osteophytes and disc bulges in most of my spine.I had myelopathy of left leg and still have.I had no symptoms in my arms or hands at all.Do you know of anyone who had myelopathy on one side of their body or one leg?Please let me know.

Dear Sherry,
So sorry for all your hard times with your back. I also have DISH and OPLL. Not a fun club to be in, for sure. My procedure, same as yours, was done August 2011 after a severe rear-end accident in 2009. I was losing the ability to grip a coffee cup and also to urinate when I needed to do so. I was taking 4-5 500mg ibuprofen each day and using a TENS unit and heated wraps on my neck 2x each day just to get through the days. Accupuncture was a great help to me as well, but my health insurance didn't cover it. I exhausted all my physical therapy allowance just before the procedure. After the surgery by my great surgeon, I packed away all my wraps and pills because I had no more pain. One sad sidebar is that I was given so many steroids in the hospital that I became a Type 2 diabetic while still in the recovery. My surgeon swore that I would revert back to normal blood sugar after all the steroids left my body, but that was not to be the case. Even though I am not on insulin, I am on Metformin still 6 years later.

In the last 7 months I have begun to have strong thoracic pain. In 2011 my surgeon told me that I might need future surgery, but he thought it would be in the lumbar area. Since I take 2 strong NSAIDS for psoriatic arthritis, I cannot take pain pills for the upper back. Now I depend heavily on Voltaren Gel applied topically 3 times each day. Combined with heat and ice, the diclofenac gel has been a God send. Not sure if my note is of any help to you, but feel free to get in touch if you wish. Second opinions led me to my great surgeon, so do not be afraid to try someone else. Get with a Dr who has experience with DISH/OPLL. This malady is so rare and not everyone knows how to address it properly. I am trying to avoid future procedures, but you may well have a better life after another visit to the OR. Best wishes to you.
Respectfully,
Debra M

Sherry,
I forgot to say that I do not know anyone who has myelopathy on one side or one leg. My osephytes have grown back in the C-2 to C-5 area of my spine. Recovery was much easier than I anticipated. Again, best wishes to you.

I had been running helter skelter before and after my surgery. I was referred to this surgeon by another who told me he was the best in multilevel cervical spine fusion.I trusted the surgeon and put my life in his hands.After the surgery i went to four surgeons who said that i should have the surgery higher up in my neck.But these surgeons all know each other because they worked with each other and they are singing from the same hymn sheet.The most distressing thing for me is that they were all looking at the very top of my neck and making a decision.What about the rest of my spine which is so poor.I might walk after the surgery higher up in my neck.But for how long and depending on the risks of that surgery,i am very reluctant.Once the consent is signed you have no leg to stand on if things go wrong like what im experiencing now.I had no idea that you had this condition as well.Do you have stiffness throughout your spine.I only experienced this after the surgery.Could you tell me what surgery and where in your body did you have surgery.How extensive is your OPLL and osteophytes. Well im glad that you are feeling better after the surgery.One of the predisposing cause of DISH is diabetes.But you acquired it from your steroid injections.Really up to date a cause for DISH has not been found.I had phoned the research centre in Tokyo.Only surgery is recommended. But really not many surgeons know how to treat this condition.So we are human guinea pigs.What they learn from us is far greater than what we get in return.This is my opinion.If this surgeon had my interest at heart,he should have said to me that the risks are very high,and that he did not an expert in this condition.He should not have told me that i will walk after the surgery which left me a quadriplegic.This is concealing the risks for for his benefit.

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.