DISH (diffuse idiopathic skeletal hyperostosis) or Forestier's

I just had x-rays of hips and shoulders. Severe osteoarthritis in right shoulder with osteophyte. Moderate Osteo arthritis in left shoulder with osteophyte. Hips are listed as mild osteoarthritis but pain there is more than I would think with mild osteoarthritis. Different radiologist read that one verses the shoulders. Maybe it’s the tendonopathy in the hips that is bothering me. All I keep saying is that I’m too young for all this to happen.

I have DISH disease it has effected my throat and back..I’ve had surgery because my airway was collapsing..I have had a back surgery because of several surs ..I am always in pain..Does anyone know of a specialist in Northern Mich that I could go see?

I am so sorry for your pain. We DISH patients all have many similarities and some have more and may be at different stages of their disease. I wish I could help you with your search. I have a couple specialists that know some info about DISH . The spine specialist seem to know the most. He actually said that looking at my scans and x-rays he expected somebody in person that would look a lot worse. I said don’t let the outside fool you. Just because I can still do some things doesn’t mean I’m not in pain doing it. We need to keep educating people including physicians about this disease. I pray you find somebody to help you.

I had my first radio frequency ablation on Monday. I was lightly sedated for it. I think it went well so far. We’ll see if it lasts. Do to have the opposite side done next Monday and then steroid blocks on the lower back the following Monday. Just doing what we can to keep me moving. Water exercises are really good for me and I also aqua jog while I’m in there. My goal is a total of 30 minutes between exercises and aqua jogging. Then hot tub for 15 or 20 minutes. I also use heating pad in the morning before I go to work and in the evening when I finally sit down .
We just got snow for the first time last night and very grateful we did not get much & the ground is still warm. I really was NOT looking forward to snow removal. But I know it’s a inevitable . Here is hoping for a mild winter.
I do hope and pray that all my fellow dishies as well as other conditions that are listed on this website are resolved to the best of our human abilities and pray that God hears our prayers & gives us mercy.

I was diagnosed with DISH in 2012 and since 2014 I’ve had 8 rods and 7 back surgeries. Both of my achilles tendons are bone or calcified. I’ve had pain since 2009 and have huge bone spurs throughout my joints and bones.

Hi. If I can call you, Thomas, I am so sorry for all the surgeries that you’ve had to go through and endure because of this awful disease. I certainly can feel some of your pain and don’t know whether or not I will ever have to have surgery but I will do whatever I can to avoid it if possible. My thoughts and prayers are with you and other dish, patients and patients with spinal problems in general. I would never ever want anybody to be in pain but I know unfortunately it is part of the process. I can only hope someday that they would find a cure for this disease, but I don’t know if that day will ever come. Best wishes.

Hi, Community.... Im a retired nurse with this unfortunate diagnosis at 62. Mine is in my lumbar(L1-L5), since my back round is Open Heart I have been reading and researching the answer to my question??? Do I see a Neurosurgeon or a back Ortho?? Im in Northern California Sacramento area any suggestions. So sad to hear about others pains and lack of research to help with some future support.

I’m sorry for your unfortunate diagnosis. I too am a dishie. When you say your background is in open-heart, do you mean professionally? Or personally? I ask because I have had open heart surgery. And part of me wonders if the dish or the hyperparathyroidism that I had , may have caused mu heart valve calcification and having to have ascending aorta repair with graft. My arteries were clear so I did not have to have any bypass. My cardiovascular surgeon told me that when he saw my aorta, he knew I had some kind of connective tissue disorder. Dish is considered a connective tissue disorder. I have a couple bone spurs formations off the spine and many bone spurs up and down the spine. and I have bulging disc toward the spine. I have some stenosis. I currently am a patient of pain management. I have been seen by a spine specialist who doesn’t feel at this point I need surgery yet. Injections at pain management are controlling some things but not 100%. Certain level of pain. The problem with the steroids is you have to worry about bone degradation. I am due for a DEXA scan anyway. I think I had this very young. I had ortho tell me at 40 that my spine looked like that of somebody much older. You may have to have a variety of practitioners helping you. I am actually starting to think about trying acupuncture. Do what you can to Research and my thoughts and prayers are with you.

I forgot to say that I am currently 55 years old and had my open-heart surgery at 50. I too am a medical professional..

I was diagnosed with DISH (Forestier’s Disease) last year with multiple areas on my thoracic and lumbar spine. I am developing protruding boney areas on my chest and sternum areas as well. I also have several areas of stenosis in my cervical and lumbar spines. It has become very painful, especially when I try to sleep at night. I have always been a side sleeper but now if I lay on my side for very long, my chest really begins to hurt all around the sternum. I am very stiff all the time and attempting to bend over to retrieve something from the floor has become very difficult. I just turned 55 and feel like I am at least 75 because of the pain and stiffness. I have also developed excruciating pain in my groin on both side, especially the left and it is very difficult to spread my legs apart because of the pain and the tendons in my groin have become very tight and hard. It’s funny that the last two people that have posted on here are in the medical profession. I am a retired physical therapist assistant of 20 years and had to take an early retirement because of the severe pain and difficulty with safely transferring and ambulating with patients.