DISH (diffuse idiopathic skeletal hyperostosis) or Forestier's

@collenyoung, thanks for reaching out. My referral is being sent to my insurance carrier so my fingers are crossed that they ok this. I really need to know what to expect and what can be done with Dish/Axial spondoloarthritis and if you can have both.

You CAN have both. And they are both very different AND similar. AS is an autoimmune disease, DISH is not. No cure for either, but there are things that definitely help. After going through 4 Rheumatologists who knew little and offered nothing, I saw a physiatrist and that was a true God send! If you have spurs in your neck that cause coughing or swallowing issues, see a pulmonary doc before having surgery!! I don’t know where you are located but my pulmonary doc kept me from having unnecessary surgery (Lancaster PA) - he was a professor and taught about intubation so had a very good understanding of DISH. I would suggest reading about both diseases on Mayo Clinic’s site, but also reach out to other DISHies on the DISH Facebook forum and other sites that aren’t as clinical. While it’s not up and running yet (hopefully by June) check out dishdisease.support. I’m starting this website to help those with DISH and other mobility issues learn more, connect better with others, etc.

@pulaski I have degeneration of my back which has caused a scoliosis and my L- 4,5 and S-1 has stenosis. I am having a fusion. I don't know what they would do for you. I had my doctor refer me to Mayo. I got right in to a pain doctor and surgeon, but it has taken over a year to get this surgery. I had some other problems I had to deal with. Thank you for asking. Let me know how you do?

Would like to know of any cures or treatments for Diffuse Idiopathic Skeletal Hyperostosis , have trouble with opioid medication but have to take it for pain.

hi @dalehall and welcome to Mayo Clinic Connect. You'll notice that I moved your message to this existing discussion about DISH (diffuse idiopathic skeletal hyperostosis) or Forestier's. I did this so you can meet others members talking about DISH like @sueblue @rackerdan @ken82 @pulaski @pulaski @wendysuej @ralph13 and others. Click VIEW & REPLY to see their past posts.

Dale, what issues are you having with opioids? Have you tried other pain medications or therapies?

@doug2080 My primary care refereed me to Mayo. Have you tried a doctor you know to refer you? I have been reading through all the different peoples elements with this Dish and it sounds really sad. My heart goes out to you and I feel so lucky to have only the problem I have and will heal. I had a 9 hour surgery on my back. But, what you are dealing with is much worse. My thoughts and prayers will be with all of you.

Is anyone currently being treated for DISH at Mayo JAX? Thx.

Mayo Clinic in Rochester, Minnesota was one of the most incredible experiences I have ever had! The teams that are put together for each patient are wonderful. The art and music that was literally everywhere gave me a sense of ease that was gratefully received. The volunteers that are literally everywhere are fantastic! If I ever win a lottery ticket I know NPR and Mayo will be getting funding from me!

Color me grateful for superior care of mind, body and soul at Mayo.

Paula, I see from your bio that you are also a photographer. Should you have any photos from Mayo and St. Mary's, you might want to add them to Jennifer's blog here:
- A Patient-Guided Tour of St. Mary’s at Mayo Clinic, Rochester https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/a-patient-guided-tour-of-st-marys-at-mayo-clinic-rochester/

I am sorry that I have tremors, that is what really curtailed my photography career ~ and why I became a Massage Therapist. I retired in 2016. I would love to photograph the clinic in Rochester some day now, they are much better! When I walked in the front door and saw Dale Chihuly art hanging from the ceilings and the music from a beautiful pianist sitting at a grand piano I was overwhelmed by the care put into creating an "experience beyond illness". I am so grateful to all the people who make Mayo work.