I have had trigeminal neuralgia for almost 9 years. 6 neurologists a neurosurgeon and 3 family doctors have agreed on the diagnosis. I have had a partially successful MVD, gamma knife many of the main stream drugs have helped through the years. My TN was fully controlled by meds. I was having cognitive issues caused by the meds and so decided to have an MVD in an attempt to get off the meds to be more successful at work. I have been unsuccessful at controlling the pain (2100 mg of Gabapentin, 100 mg of amptriptilyn, 10 mg of baclofen, 90 mg of Cymbalta) since the MVD. As such I have been on Cigna disability since January 2013. Both my family doctor and neurologist agree that I am unable to preform gainful employment due to the side effects of meds. In May of this year was notified that Cigna that not only am I no longer disabled, I am able to preform my own occupation. I am on more meds than ever and having more side effects than ever. We appealed their decision. I was notified last week that they have reversed
their decision. That after a peer to peer review with my Family
Doctor, CIGNA’s neurologist has determined, without reviewing all of my records or seeing or talking to me, that my doctors for the past 9 years have been wrong, that I do not have TN. My doctor was rudely informed that I have atypical face pain. I now have to have proof from a facial pain expert (their language)that my pain is in fact real. I guess my neurologists and neurosurgeon who found my trigeminal nerve tightly tethered to
the cerebellum are not expert enough for them. I am so mad!! Guess it’s time to hire an attorney.
I am just starting down this same road myself with my own insurance company. I am not as far down the path as you are. What is a facial pain expert? I am also on LTD. First from my meds and now from complications from a minimally effective MVD. Keep intouch. All the best and I wish you many pain free days ahead.
I am so sorry to you are having to walk through this. I had a dr. persuade a jury my injury TN was all in my mind. Didn't matter all the evidence, drs etc. saying I have TN. Jury got 3 day week-end, I got a bill from the county for $51,000/ They paid him $15,000 so I understand completely.
This is so maddening…I’m so sorry for the extra stress this must be causing you! Hard to believe after all that , that was they’re decision, so ridiculous!
I just dropped off my Canadian disability papers today…my work insurance with whom I have LTD is making me apply, part of the contract, it’s been super stressful just filling out the forms etc I’m just happy it’s out of my hands right now…we’ll see what happens in approximately 4 months time.
I get so angry …despite the extreme pain, poor quality of Life, emotional side effects, the meds etc we also have to advocate for something we’d rather not have to do.
I’d gladly go back to work in a heartbeat …then deal with ALL of this.
Positive thoughts Hope!