Quick update: 
Met with Dr Christo at JH re: treatment a couple weeks ago. It was helpful to have them give me a dosing schedule of the otc medications I take for the fibrous dysplasia pain on the left side of my head. They recommend no more than 4000mg of acetaminophen daily. Turns out I had been taking roughly 5700ish mg daily so that had to change. They also prescribed cymbalta, which I had only really ever heard of being used for anxiety/depression, but it has also apparently been effective in the management of chronic musculoskeletal pain. I have been taking for a couple weeks and so far have not noticed a change, but I will stick with it for the month and see if that changes. 🤞
I will return to them in about a month for a spheno•pteryo•palatine ganglion (Google SPG injection, it's pretty wild)nerve block. It's an injection into the side of my head targeting a specific little nerve bundle where my lesions are. The dr said it might give me a month of relief...or maybe only a week...or maybe longer. At this point, even if it only lasts for a week, that would be the 1st pain free week I will have had in 2 years, so I'm absolutely willing to give it a try! 

Thank you again for reading my updates and all the well wishes and words of encouragement my friends, I genuinely appreciate you🩷🙏