The stridor sounds really scary- did the doctors not identify a cause? There are other nerve pain medications, sometimes it can take a while to find the right one, so it might be helpful to see the neuro again if you can. Ben’s Friends also have a Facila Pain group with lots of good info & advice, here’s a link: http://www.livingwithfacialpain.org/ - you can just read the posts if you don’t want to join, or sign up if there’s something you want to ask.
My first suggestion would be the same as Isaiah’s- to double check that the ligaments aren’t getting calcified. Maybe otherwise there could be a build up of scar tissue from surgery which could be pinching the nerves?
If this is the case, I’ve seen a mention of cold laser therapy someone’s had to help with this, MusicGeek: Going to get help and surgery! Maybe you could message her to ask about symptoms & the treatment?
And here’s a link to a study which showed it might help:
https://www.ncbi.nlm.nih.gov/pubmed/23607736
I don’t want to be promoting any service, but if you google it, there’s lots of adverts!
And I wouldn’t know if it’s something you could get funding for either…
Best wishes, hope that something is found.
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