I’m going to get a refferral from my pain doc that I just saw hopefully get to see dr kim burshiel what are ur guy’s thoughts could this be it may I finally be on the right road to recovery and while I’m excited about it I probably won’t get in for awhile so please keep blessing me with ur support I need it I appreciate it
Sounds like you had a really successful consult with the pain doc, Justus. I’m happy you got what you were hoping for, and I hope that things turn out well.
Too bad about the wait: maybe this is the time to learn about how others cope. There’s plenty of reading to keep you busy from now until you get to OHSU. Learning to cope better with the pain is a skill that will stand you in good stead for your whole life: there are going to be plenty of other times, whether you find a resolution to your facial pain or not, when you will benefit from understanding pain and how to deal with it.
There are some interesting things happening in Australia (of all places) with regards to understanding and managing pain. Here’s a summary of their approach.
Anyway, good luck to you on this journey.
Seenie
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yay! hang in there
Well I think just knowing I have something planned will also help me cope my pain doc thinks that it probably has to do with the optic nerve and that’s y he decided to refer me there instead he says where my area of pain is really sensitive he just wouldn’t feel comfortable that’s y the retrobulbar block is the only one he doesn’t do he told me that the problem could be optic neuritis what do you guy’s think about that ?..is it possible to have optic neuritis with only sensitivity to light but no vision loss ?
I don’t know much about optic neuritis, I did a quick search on WebMD and found some basic info (I like that site, it breaks everything down into easy-to-understand overviews). It sure seems like a possibility based on what you’ve been saying. Use the time before your appt to research it thoroughly and write out a list of questions/concerns/possible options.
And yes, as suggested prior, take a good look at pain management options. Knowing how to manage pain will serve you well in general and it will help take away the hopelessness a chronic issues can create (not that I’m saying optic neuritis is chronic, I don’t know enough about it to say either way). Things always seem better when you have a plan!
optic neuritis Sounds reasonable… It doesn’t always cause vision changes. Curious about something @Justus Would you happen to be a gamer by chance? One of the most common aggravators at your age is “screen time” Binge watching “netflix” is too… Try an eye patch on the effected eye when flaring for a bit each day. if nothing else you can talk like a pirate to your little sister. Sh’d get a kick out of that if nothing else.
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Yeah I don’t really play videogame that much but I’d say it’s more of a pain thing than a vision problem even though I have sensitivity to light no vision loss just bothers my eyes is dr kim burchile pretty good at diagnosing and treating than most doctors ? I heard alot of good things about OHSU and I just hope he doesn’t say it’s all in my head like some doctors I just wonder if he’s better at solving complex difficult pain like mine I really just hope he can save me
While I don’t know much about Optic Neuritis (I have TN myself), I can tell you that Dr. Burchiel and his team are great. He performed a microvascular decompression surgery on me back in May and the support has been wonderful. He’s definitely one of the top pain guys out there for TN and has written many papers and even designed a lot of the procedures used to treat pain, so I imagine he’ll know what to do if anybody does!
Good luck… Say hello to him from me 
Haha I will …yeah I’m actually really hopeful and excited do you think he’ll be able to diagnose me and if it is something to do with the optic nerve you think he’ll be able to help because I chose him over an opthalmologist because an opthalmologist would probably just say his vision is fine so nothing’s wrong that’s what happened to me in the past
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Dr. Burchiel is excellent with diagnosing facial pain, especially TN. He has actually developed on on-line diagnostic tool. You can access it at
https://neurosurgery.ohsu.edu/tgn.php
Good luck with your appointment and keep us posted on how you are doing.
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Thanks for sharing that with us, Not_Again! We’ll have to look into adding that to our resource library.
Seenie
I just took the assessment. I actually think my neuro in Ohio used it originally, it seemed familiar and it gave me the sne diagnosis, too.
This seems like a great tool!