Ohh, I get it now =(. I’m so sorry; that is really frustrating. I am shaking my head at the unfair imbalance of power between providers (especially what I sometimes refer to as “super-specialists”) and us mere mortals in pain. I’m in a similar situation, only it’s not as urgent because I do have some other strategies, just not this specific person’s expertise for a one if my significant conditions…which is also very specialized. Sigh.

That was actually one of the situations I had in mind when I mentioned I escalated my concern. Literally no one in the office was responding to me—complete silence on the portal and no response to phone messages for six weeks (I was told if hear back from someone the following week and they knew I was an out of state patient), from anyone, not even the nurse coordinator they work with. I ended up submitting a grievance to the patient experience office, and that is what finally prompted someone to respond to me. I understand not wanting to piss off the provider…but if you’ve truly been waiting months with only someone saying to “be patient,” I think it qualifies as having been patient enough? Maybe you could start somewhere in between like asking to communicate with whomever else on their team (nurse, NP, PA), or if not them asking to speak with the practice manager or anyone who would be appropriate. If you can frame it as, “I know he’s very busy, and I understand. I’m just looking for more information on when specifically we can discuss this, because right now I have no information, and I’ve been waiting x amount of months without any information…” You’re shining a light on the frustration of the uncertainty instead of directly pointing the finger of blame >_< .

A large institution should have such an office, and honestly they’d forward your concern to the practice manager anyway. The “complaint” doesn’t usually go directly to the provider anyway—it of course goes to a person in another position to attempt to mediate or discuss it with you.

For what items worth, I’m not sure about your condition, but if you didn’t cover with your PT a pain neuroscience approach such as with graded motor imagery or other strategies, it may be worth looking into because I’ve found central sensitization with chronic pain, even when it starts with a physical injury or condition usually gets overlooked by PTs and physicians, and it’s something that can make a difference immediately while also pursuing treatment for the biomedical issues that set off the pain and even make that treatment more effective. I mentioned one of my PTs brought an app called Curable to my attention, and I’m considering trying it for a more structured approach outside of PT as long as I can figure out how to apply it to myself. It was developed by experts who actually have chronic pain. I had PT for years and finally graded motor imagery (a lot of the research is on back and neck pain) is what finally helped me make more progress in 3 months than I did in 3 years.

I’m wishing you fortitude and hope you get some answers soon.