Hi Everyone from previous OPLL forum. Has anyone been told that they too have DISH (diffuse idiopathic skeletal hyperostosis)? (DISH = Ossification starts and extends from insertions of skeletal muscles, ligaments, and joint capsules.)

I have just been told that my OPLL and DISH may not be operable at all and that I need to look at having a tens unit installed to relieve some of the pain until I die.

Bad news......

Any updates on doctors? I have the list from the previous OPLL discussion and no luck here in California or Nevada. No surgeon will take my case because it is so complex and the chance of paralyzation is almost inevitable.

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h541, wow! what is your degree of opll, when were you diganosed and what are your symptoms? my husband had surgery 11-2010 for c-2 to t-4. the surgery lasted almost 7 hours. the surgery sight goes from base of skull to shoulder blades. he had paralysis in right hand arm, part of left hand, right leg, severe burning stomach, upper thighs, always cold, and constant spasms. he had several falls due to right leg not wrking and the loss of muscle was very noticeable. since surgery upper body has improved. he can use right hand and both arms is able to lift weights and was doing push ups. buttttt last 3 wks he is losing the use of his right leg. it is dragging and spasms and burning in both legs has started. the right leg is quite smaller than the left from hip down. and yes he is scared. the surgery was very intense, replaced bone with rods and screws and it is heavy and uncomfortable. he has limited neck motion since it is fused. so i will make a apt for him to see doctor. either disease is growing or has gone to lumbar area. He was told if surgery is done again that they would go in front and yes paralysis is very very high if he even survives.

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They believe that the opll is about 60% and growing at 1mm per year which is well above the .4 mm for average OPLL sufferers. None of the surgeons can agree on the degree and state that it is not a matter in my case since so much has calcified. I was diagnosed in August 2008 have already had one surgery for five hours in October 2008 and it made everything worse. I was told that if I did not have the surgery I could expect to be paralyzed at any time and this came from more than one surgeon. I had severe pain in my neck, back, arms and legs (legs = sciatica and facet arthropathy) prior to surgery. **After surgery all pain intensified and became worse. A tremor started in my right hand and now shakes like I have Parkinson's. I am unable to sign my name or eat using my dominate hand anymore. I have to have someone take care of me - bathe me, shave me, and any other grooming that I used to do with my dominate hand. I do not sleep more than 40 minutes at a time because the pain from my arms ad legs going numb wakes me up. I am unable to open bottles of medicines while trying to sleep because my hands are so numb. I have to anticipate how many pills and times I will be up and lay out the pills that I need during the night; I then pick them up using my tongue during the night. I have to constantly switch positions because of the pain the whole day. Once I am up (sitting or reclining) some of the numbness goes away but it still takes me forever to do anything (typing this took an hour and a half and I used to type 70 wpm.) My walking is also being affected. I have started limping and fall or trip almost daily because of the pain, numbness and bone spurs (calcification) that are in my T - Spine and Lumbar Spine. I can go on and on but I think you can get the picture of how much pain I am dealing with as your husband is dealing with the same it seems. I have tried massage, acupuncture, chiropractic and physical therapy (both chiropractic and physical therapist almost paralyzed me if the would have popped my neck like they were trying to do but it would not release or pop for them - the physical therapist said I had one of the top three severe cases he has ever seen and proceeded to stand on the table to apply pressure using his elbows to my neck. Bad thing is they all had the MRI's and reports and still did this to me), heat, ice, tens unit, lidoderm patches, narcotics etc etc etc etc. I have been told that my discs and spinal cord are most likely fused together because of the ossification and that is also causing extreme pain (the bone spur from the disc ahas fused itself to the ossification on the spinal cord.)

I constantly am on medications and have a tens unit, ice, heat and pain patches attached to my body at all times. The doctor that did my surgery was an ortho surgeon and he did not address anything in the spinal area; only neurosurgeons can do that and now they are very leery of touching it since it most likely will lead to spinal fluid leak, infection, paralysis and death.

I cannot take any OTC (over the counter) medicines since the Ibuprofens, Aleve, and Tylenol have returned and still return high renal values when I take them. I have to drink 7-8 liters of water each day to flush my kidneys because of the damage that the medications cause.

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I have been diagnosed with both DISH and OPLL. I have the opll in my cervical and thoracic spine. I have extra bone growth also on my ligmentum flavum and facet joints in my thoracic spine. I also have extra bone on an elbow and a hip. I have extra bone or osteoarthritis in my knees. I used to have one good hip, but the past few months I have had pain off and on even in my good hip. Shoulder is said to be a mess also with Calcium deposits among other things. Don't think anybody on this earth can stop the progression of all this. I had surgery on c2-c7 in 2006. I am focused this spring and summer on living my life doing as much as I can, while I can. I am afraid the day is going to come when I will be even more limited than I am some now. God bless us all!

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kanasopll, what does this mean, the doctors don't feel surgery will be of help to you? i hate hate hate this disease. is it robbing the time i have with my husband? he is out of town alot due to his job and last night he told me that saturday he woke up several times to leg cramps in both of his legs. the spasms in the right leg are dailey, burning, cold, numbness. it is now from the hip down. today i will call his surgeon make apt. this again is scary i thought after the surgery 2 months ago that things would be better for awhile longer.

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You are so right. I too have been focusing on doing what I can right now since the time will come when I will not be able to move as much as I am now. I too have extra bone in a knee, pelvis and fingers! I cannot believe how little is known about these disease(s) (OPLL and DISH) by NORD and American surgeons. Japanese surgeons are writing books and giving lectures in Japan about this because it is so common there.

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