DISH (diffuse idiopathic skeletal hyperostosis) or Forestier's

Hi, your comment about Sacramento caught my eye as I live in Placer County and currently have Kaiser. I am in my late 60s, and after many years of spine problems was told several years ago that my lumbar was starting to fuse (l4/5/S1). Then, a couple of years ago, a spinal surgeon informed me that my entire thoracic region is now fused. None of these medical professionals can tell me why my spine is fusing. All they say is, "it can't be Ankylosing Spondylitis" since the fusing was found so late in life. I was given Accutane in my early 20s and again in my early 50s and my own research has led me to conclude that this is likely the culprit. The Kaiser spine surgeon is unwilling to give me an actual diagnosis of DISH. Not sure why, as I am not seeking to place liability on anyone. I just want to know what the hell is causing my spine to fuse and determine if there is there anything we can do to slow the progression. - "Frustrated in Sacramento"

I am in my late 60s, and after many years of spine problems was told several years ago that my lumbar was starting to fuse (l4/5/S1). Then, a couple of years ago, a spinal surgeon informed me that my entire thoracic region is now fused. None of these medical professionals can tell me why my spine is fusing. All they say is, "it can't be Ankylosing Spondylitis" since the fusing was found so late in life. I was given Accutane in my early 20s and again in my early 50s and my own research has led me to conclude that this is likely the culprit. The Kaiser spine surgeon is unwilling to give me an actual diagnosis of DISH. Not sure why, as I am not seeking to place liability on anyone. I want to know what the hell is causing my spine to fuse and determine if there is there anything we can do to slow the progression. - "Frustrated in Sacramento"

So sorry for all your pain, Jimmy. I will tell you that are year ago I was in more pain than I am now. I have employed physical therapy, pain management, which has done branch blocks and radio frequency, ablation‘s and epidurals. So I am moving a bit better. So I want you to know that there is hope. Stay strong.

Thank you. I have been through physical therapy, chiropractics, and had injections, but they have all been so short lived. I try to manage with heat and stretching, but it is still getting worse. Thank you greatly for the advice. I pray that you can keep yours under control as well.

Thank you .

I forget to mention I too do heat as well . I also do massage therapy.
I’m ready to try acupuncture for 1 area that is not great. I have found warmer outside temps help some. I also have osteoarthritis as well.

I went through acupuncture as well, but I question the training that this went through. He was a chiropractor and he only knew one setting on the machine he used. I was going to teach him how to use different settings on the electrical stimulation machine he used, but it made him mad that a patient wanted to teach him how to use his machine. LOL! Acupuncture and acupressure are mainly used for nerve and muscle stimulation, but does nothing really for bone issues. But if you have nerve issues or muscle pain secondary to bone issues, it will work well.

Thank you for your reply. That is helpful. Yes I do have neuropathy associated with dish. That is what I think is happening in that one area that has not done well and I can’t take gabapentin during the day while I work.
I have been to a practitioner who did not seem to like it when I educated them on dish. They were unaware of the condition, and that was an orthopedic PA. So those of us who have read extensively on dish, we may need to educate some of our practitioners. They can’t always know about everything and dish has been sold to some practitioners that it’s not that very serious. For some patients it may not be but as I saw one article where a surgeon said that it’s not that bad until it is bad. So I think that was said well. Those of us who have it bad know how bad it can be.

I have had DISH for some time and it got to the point where some days it was hard to get out of bed due to the pain. I couldn't sleep for more than 3 hours at a time. Dont let doctors tell you that there isn't anything that can be done... there is.
Go to YouTube and watch videos on K2 and the proper way to take it. K2 basically removes calcium deposits from your arteries and other places and puts it back where it belongs. While NO studies have been done concerning DISH and K2, I can say that after taking it for less than a month, my pain was completely gone! If you have DISH you will probably think that this is impossible... You need to take it with D3, and a healthy fat like Avocado Oil. I also take Krill Oil which is one of the better Omega3's.
My doctor told me there was nothing I could do and suggested physical therapy which only gave me more pain.
I'm excited to see the next x-rays on my back. I littery have no pain anymore.

Thank you for that information, and I certainly may try, but will have to think about that from standpoint of my other conditions. I so appreciate your knowledge. Continued luck with your dish.

For any one looking for a Dish support group their is one on Facebook.