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.

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.

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

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.

Thank you

sherry