I hope everyone is as well as can be expected
The short version of this post is: For those with "unfixable" pain generators, what does your long-term pain management plan entail?? I'm thinking for those people who are not surgical candidates, and who either don't get relief with the various PM injections, or who don't get long-lasting relief and therefore can't depend on injections to be the crux of their management strategy...
The longer version is this: We are pretty sure that my pain generator is tarlov cysts (it's a very rare cause of chronic low back pain). I won't bore you with the details, but at this point I believe they are about to make that my definitive diagnosis. The first line treatment is ESI's at the cysts locations which I have responded very well to, but only get relief for a few days. Of course they can't keep repeating these on a weekly basis so that is not going to be a viable long-term tool.
Next, there are surgical treatments but the risks are very high so at this point I am not sure whether I will want to pursue an aggressive surgical option. I will obviously be discussing these options with my doctor.
Barring surgical treatment, they basically recommend "conservative pain management and lifestyle adjustments." I just don't know what exactly that means. I'm dreading the "there's nothing more we can do" speech, so I really want to make sure I'm aware of what the long-term, conservative PM options are so I can be prepared to discuss these with my doctor. SCS is off the table because it's mechanical pain and I'm in my early 20's, so they really are hesitant to go that route with me. Are medications the only other option??
As much as I have researched and read about chronic pain, I truly have no appreciation for what long-term pain management looks like. I know I'm not the only one with an "unfixable" pain generator, and I know they do things to help people manage and get back a quality of life, but I don't know how they do long-term pain management...