@suev Thank you so much for your kind words. My surgeon loved his portrait and the news of it even made it into a publication for his college alumni. It meant a lot to me to do that since he made it possible for me to paint again with accuracy.

I looked up SAPHO and found this website. https://rarediseases.info.nih.gov/diseases/7606/sapho-syndrome

Your condition sounds like a very complex problem and it will likely be discussed at spine conferences and perhaps in literature. What will they replace the vertebrae with? Is it donor bone or a manufactured prosthetic? This sounds like much more than just fusing existing vertebrae. I am glad you have a motorized chair to help you function.

In my case, I was suspecting that I may have an immune reaction to foreign materials or possibly titanium because I had so many reactions to all the metals I tried when I had pierced earrings. For many years I could wear the earrings, but then it changed. Nothing worked, and it always turned into some kind of infection no matter what I did. I also have asthma that can cause a lot of breathing issues, and I didn't want a plate on the front of my spine talking up space pressing into my esophagus and trachea from behind. I tried to get a test for reactions to metals prior to surgery, but the surgeon (not at Mayo) I saw at that time would not test me even though there was a lab that did that. I had my GP do the test and amazingly, it did not show reactions, but you can always develop a reaction later, and spine hardware would be difficult to remove if there was a problem. Since it was one level, it was easier to ask for no hardware and by then, I was seen by a surgeon at Mayo and he agreed to do it with just a bone spacer disc if I stayed in a neck brace for 3 months. Deal. It was worth it. I also had metals in dental work for many years with crowns that when removed suddenly improved my breathing. That was a couple years after spine surgery when I was getting ceramic dental implants and the teeth were removed. Then I broke my ankle a few years later, and got titanium plates installed. 6 months later, I had chronic hives and had to stay on antihistamine all the time, my ankle throbbed with pain all the time, and there was pigment forming over the plates on the skin. After a year and a half of healing, I had the surgical plates removed and it resolved the pain and hives, so I figure that I was right about my body reacting to foreign materials. The metals are alloys anyway, and not pure, so it's hard to know exactly what caused it. I am glad I chose to do spine surgery without hardware. This is how they did fusions before plates were invented. The plate isn't always needed, but it does aid in stability increasing fusion rates and peace of mind for the surgeon.

My environmental allergy medicine doctor told me about a practice in Texas that treats patients for reactions to implants in case there were no options to avoid hardware and there was an issue. It is the Environmental Health Center Dallas. I ave recommended this to others on Connect and some patients are treating there.

Have you sought second opinions for your surgery? If you feel very confident in your surgeon, that's great, but you have one chance to do this major step. I had 6 opinions, but that was because the first 5 local surgeons missed the correct diagnosis, and that is why I came to Mayo. FYI, I lost a half an inch of height with my collapsed C5/C6 and the fusion gave my height back to me, so I think you will regain height too.

Jennifer