I've had AA for 17 yrs, but only diagnosed 3yrs ago. I searched for an answer myself after a Neurosurgeon told me, "I'm not touching your back!
You're Cauda Equina looks like a bowl of spaghetti. I have no idea what is going on."
I live in Boston, and there are multiple top hospitals here. I finally found a spine specialist who explained it. He was horrified to hear I was forced into 30 to 40 injections over 14 yrs (Even after reporting they were not helping).
I am 47, and unfortunately have become disabled to the point of using a walker, and other 'glamorous' issues like multiple incidents of incontinence.
I am as frustrated as most of you.
I have been flat out lied to. For example, one clinic told me they "Specialize in AA, and treat multiple patients with it. (I quickly got fired for non-compliance with care by refusing shots). Then my pain questioned by a Dr who has "a couple patients with AA who don't have any pain". (That has absolutely no bearing on my situation. I'm thinking, it's a pain clinic...why would a patient without pain go there?)
The same drs telling me how advanced my AA is from my obvious low function, and abnormal tests, are questioning my severity of pain.
But thank God I find small "wins", bc those are the drs who keep me going. I was recently told I cannot get the spine stim i was excited about, bc of a chronic infection issue in my body. So, just like the last 17 yrs, my pain is controlled by medication primarily opiates. Finally, I just want to say while discussing my diagnosis with my grandmother, who's been in a wheelchair bc back pain, she randomly said , "Its weird, I feel like water is trickling down my legs sometimes"...I was blown away. I realized mine is hereditary.