You do indeed have a unique set up there. Logically, I do not understand why they can not go in and remove some of the bone and also shave areas to keep things from rubbing against one another and thinking that would certainly "help" ease some of your pain in that area.
My goodness. I am glad you have a doctor trying to help you.
We all understand what you mean by wanting to be able to do daily things. I have had to give up what I love the most this year, which is gardening. I have a "magazine cover" gorgeous log home in the foothills of the blueridge mountains and I can't get out to attend to the gardening and enhancing the landscaping.. and also the daily chores goes without saying. It gets really frustrating I know.
I have lived with back issues since age 18 and am now 44. Most ongoing and recent issues has been going on for over 3 years, where i have not been able to do much at all. I had a fusion 4/18 at L4/L5 and am working hard to heal and get back to doing most of those things again. So, those weeds better look out!!
Try and keep upbeat and positive as you can, it really helps things go just a bit easier.
Please continue to post and let us know what is going on with you. We all learn from each other and your in a unique situation which I am extremely interested in seeing how you are doing and being treated moving forward.
I wish you the best and relief from your pain. Take care and hang in there. Tammy