It seems strange to me that doctors have no idea what to do. They should be familiar with what action or recommendations to make for CES. I'm sure they recognize that your surgeon should be taking action. From my experience, it seems like doctors generally work together and stick up for one another. It may be that the doctors aren't wanting to treat you because they don't want a lawsuit on their hands that should belong to someone else. I really don't know but it seems like they are really giving you the runaround.

@skiprel1957
You need to keep pushing and asking questions. When your doctor puts his/her head in the sand and doesn't do anything more for you then it's time to find another doctor. Request your records including any imaging discs. You should collect all your records before going to another doctor. Push for answers and tell them you're tired of being ignored right off the bat. I've done it for 15 years because the doctors kept telling me they didn't see anything that would cause my pain. Come to find out, the problem showed up in the very first MRI they did! I've slowly deteriorated over the years. Last June the CES symptoms started snowballing and currently are continuing to progress. I have Tarlov Cysts and a tethered cord caused by a fall. Doctors don't acknowledge the cysts because they are an "incidental finding" and aren't supposed to cause issues. They DO cause many debilitating symptoms and need to be taken care of. I absolutely understand your frustration cuz I've gone through it all too. It upsets me to no end that it's an emergency surgery for everyone else but because they won't acknowledge the cysts it's not for me. One of my doctors just told me she would recommend a lawsuit because of they way I've been treated (or mistreated I guess). I'm just left here to suffer just like you!

@SkiprelI957 If you're avoiding surgery, I have intractable pain after two FUSIONS (2nd successful) that only ceases after tons of narcotics. My pain management doctor has suggested a "intrathecal pain pump" where they implant a hockey puck-sized receptacle to the left or right of your belly button. From that receptacle a catheter tube is threaded under the skin to the spine where it directly releases meds directly into your spinal fluid. They generally do a trial run first but it sounds pretty exciting.The pump is filled generally with morphine (Baclofen for spasms) and you go back to the doctors office every 4 to 6 weeks (unsure of intervals, could be longer!) for your "refill" and they say you're in/out in 15 minutes. It runs on a battery which lasts 5-7 years. This traditionally was given to terminal patients, but more and more pain management doctors are using it on chronic pain patients, especially ones they can't figure out the source of the pain, like ME. As this technology is nearly 100 years old, they've got it down. GOOGLE it. I'm going for it. It might help you. Good luck. Jolene Kellner