Adalaide-

I totally understand your frustration with the insurance company. My lawyer and I fought WC for 8 months for Calamare therapy. It was crazy to me that they would pay the full price for a SCS but not $1500 for Calamare. I eventually was able to talk to the CEO of my WC company. In the end the finally did pay for the treatment (along with the cost of a hotel so I didn't have to drive back and forth each day 1.5 hours), but the battle was long and tiring.

I have a new PM now and he hadn't even heard about Calamare before. When I told him about it and gave him info to read his reply was "it doesn't look like it can harm you, this disease is tough to treat so anything is worth a shot." That was my feeling about it too. A SCS has lots of things that can go wrong, why not try something less invasive without all that risk first? If it doesn't work I'm no worse off than before the treatment. That's the thing about Calamare- it may not work but it won't make your symptoms worse.

I'm not sure if you know this or not, but once you do ketamine you can't do Calamare anymore. My provider gave me the lengthy explanation of why it won't work, but the bottom line is he said if I tried the ketamine first then the Calamare wasn't an option anymore.

One other treatment that I had luck with was a lidocaine infusion. It's an older treatment for neuropathic pain (but not specifically CRPS- very little research). My PM thought it was worth a try- small temporary side effects, way less risky than SCS. It along with Calamare has made my days more manageable.

Good luck to you. I do understand your frustration. Insurance companies really sap our strength.