New diagnostic tool?

I was doing some research last night and discovered a new tool for diagnosing facial pain that was developed by the neurosurgery department at OHSU here in Portland. The head of their depertment is also the head of the TNA advisory board, Dr. Kim Burchiel. At any rate, after using this tool, the results came back for me as TNP (trigeminal neuropathic pain). This is new nomenclature for me and will certainly cause me to do further research. Anyone having diagnostic problems may be interested in looking into it. The results also list possible treatment options...and you can print out the results and take them to your appointments with you.
https://neurosurgery.ohsu.edu/tgn.php

Going to ask red if this can be put on front page of this site…or somewhere prominent … Great tool

I’m really glad you brought this forward. I stumbled upon it last winter as well and came out as TN2.

And then I forgot about it! Blame going up to 3,600 gabapentin and trying trileptal for awhile as well. I was kind of out of it for awhile…

In Peter J. Jannetta’s book Trigeminal Neuralgia (Oxford University Press, 2010) he states that he believes Burchiel has too many categories, but I think it has to be useful when we are all so different. Even if it helps us find a slot-:slight_smile:

Wow...I took the test and came out as TN1...I'm so not TN1. I think it must be the question regarding anticonvulsants, where I replied I got relief from taking them. Otherwise, I just don't know how I could be no.1. I think they are good questions they're asking, though!

Oh that’s really interesting. Reveals limitations, but I think you’re right, good questions.



I took it again just now. Same answer:

trigeminal neuralgia Type 2 (TN2): Trigeminal neuralgia, type 2, (TN2): facial pain of spontaneous onset with greater than 50% as a constant pain.

One of the issues that other physicians have raised with Kim Burchiel's classification system is that it doesn't seem to do well in diagnosing mixtures of TN1 and TN2 pain. The distinction between TN2 and Trigeminal Neuropathic Pain is also somewhat artificial as both tend to respond to the same medications and both are generally considered poor candidates for MVD surgery. Believe it or not, organizations like the International Association for the Study of Pain (IASP) are still arguing over whether the pain of TN is best described as a nerve inflammation or a Cephalgia (a general term for head ache).

If I introduce the link to Burcheil's classification system on our main page, I will need to qualify it as "imperfect but possibly constructive in helping clarify diagnosis". Does anybody have a problem with that?

Regards, Red

If others find it helpful, why not post it. There is also an article by Janetta about the changes in nomenclature and his recommendation that the term atypical TN is out of date. I think it is also on the FPA/TNA site. Janetta did my first MVD in 1998, btw. What a great and empathetic doctor!

Richard A. "Red" Lawhern said:

One of the issues that other physicians have raised with Kim Burchiel's classification system is that it doesn't seem to do well in diagnosing mixtures of TN1 and TN2 pain. The distinction between TN2 and Trigeminal Neuropathic Pain is also somewhat artificial as both tend to respond to the same medications and both are generally considered poor candidates for MVD surgery. Believe it or not, organizations like the International Association for the Study of Pain (IASP) are still arguing over whether the pain of TN is best described as a nerve inflammation or a Cephalgia (a general term for head ache).

If I introduce the link to Burcheil's classification system on our main page, I will need to qualify it as "imperfect but possibly constructive in helping clarify diagnosis". Does anybody have a problem with that?

Regards, Red

No Red, I have no problem with the caveat.

Jannetta’s simplified system is:

Typical TN. Lancinating pain of sudden onset and offset.

Atypical TN. Constant pain, usually burning in nature, either from onset or altered from typical over time.

Mixed TN. Pain with elements of both typical and atypical.

The IASP must be getting paid by the minute! This is not helpful.

I have been asked by two pain specialists and two neurologist’s if I have headache. I’ve answered all: “it’s like I’ve been struck by a 2x4, not the moment of impact but the moment after impact”. They all write: does not suffer headache.

I am often mystified by how to describe my pain. I am of the “Mixed TN” variety. But that variety is not well recognized yet.

I just read your post and it is unclear to me whether you have headache or not. I have found it best to answer yes or no and THEN describe what it feels like. Just a thought. Hope your day is going well.

Bellalarke said:

No Red, I have no problem with the caveat.

Jannetta's simplified system is:

Typical TN. Lancinating pain of sudden onset and offset.

Atypical TN. Constant pain, usually burning in nature, either from onset or altered from typical over time.

Mixed TN. Pain with elements of both typical and atypical.

The IASP must be getting paid by the minute! This is not helpful.

I have been asked by two pain specialists and two neurologist's if I have headache. I've answered all: "it's like I've been struck by a 2x4, not the moment of impact but the moment after impact". They all write: does not suffer headache.

I am often mystified by how to describe my pain. I am of the "Mixed TN" variety. But that variety is not well recognized yet.

Ha! Thanks…unclear…I will stick to Yes or No-:slight_smile:

Although it has never been clear to me if this is a type of headache…

And yes, I also read the updated nomenclature and am thankful Atypical is outdated.

Thanks, my day is busier than I’d like, showing my house tomorrow. Hope prospective buyer likes shabby - but clean - sheik!

How about you?

Just came back from having Botox. Originally did it for vanity (I know....women!) before my son's wedding 9 years ago and discovered that it reduced the amount of eye pain I have with my TN flares. I too, have a mixed type of pain. There is always a constant burning, boring pain on the roof of my mouth and then I get bursts of stabbing eye pain and hot-poker like pain where #12 tooth used to reside. I was pain free after my first MVD, but at that time only had the tooth pain and twitching-needle-like prickles on my upper lip and side of my nose. When it reared its ugly head again 8 years and 7 months later, the tooth pain was accompanied by eye pain. It went away after a second MVD, but I was only pain free for 9 months. After that I had a stereotactic radiation procedure with the LINAC, but it did nothing except make part of my forehead a little numb and scramble my memory...although they said there were no such side effects....hah!!

Good luck with your house showing. I sure hope you aren't selling in order to pay for TN medical care!!

If not atypical WHAT is it called, or did I miss something? They just changed it last year from TN2.



Bellalarke said:

Ha! Thanks...unclear...I will stick to Yes or No-:)

Although it has never been clear to me if this is a type of headache...

And yes, I also read the updated nomenclature and am thankful Atypical is outdated.

Thanks, my day is busier than I'd like, showing my house tomorrow. Hope prospective buyer likes shabby - but clean - sheik!

How about you?

Have you tried Lidocaine Mouthwash for the pain in your mouth???



Not Again said:

Just came back from having Botox. Originally did it for vanity (I know....women!) before my son's wedding 9 years ago and discovered that it reduced the amount of eye pain I have with my TN flares. I too, have a mixed type of pain. There is always a constant burning, boring pain on the roof of my mouth and then I get bursts of stabbing eye pain and hot-poker like pain where #12 tooth used to reside. I was pain free after my first MVD, but at that time only had the tooth pain and twitching-needle-like prickles on my upper lip and side of my nose. When it reared its ugly head again 8 years and 7 months later, the tooth pain was accompanied by eye pain. It went away after a second MVD, but I was only pain free for 9 months. After that I had a stereotactic radiation procedure with the LINAC, but it did nothing except make part of my forehead a little numb and scramble my memory...although they said there were no such side effects....hah!!

Good luck with your house showing. I sure hope you aren't selling in order to pay for TN medical care!!

KcDancer - Have not tried lidocaine mouthwash. Never heard about it..is it prescription? Wouldn't it affect all your teeth? My burning pain is only in one specific area and it NEVER goes away. Pain meds dull it down to about 2-3 on the pain scale, but that's it. I was told I had atypical TN because my pain never responded to any of the usual meds like tegretol, baclofen, gabapentin, etc. But yet I got total relief for almost 9 years after MVD. Then when it came back, they said it was TN2. And again it was gone after MVD, but only for 9 months. Stereotactic procedure then did nothing for it. The other day when I used the new tool and plugged in my answers, it came back as trigeminal neuropathic pain. Not sure how their algorithemworks. But I am here in Portland and am going to try to get an appointment with Dr. Burchiel (he invented it) and maybe I'll find out why. The last 5 years have not been good for me and I want another MRI to see what's going on in there. Maybe the nerve is being compressed again. I just know that I have to do something different....at the end of my rope.

Yes the mouthwash is prescription - and people rave about it --- When I put it ON my face - it does not make it numb..... I don't know if the mouthwash is similar - calms nerves.... OR if it numbs your mouth - which could give you intermintent relief when you don't need your mouth for eating I suppose --- should be able to get it with a phone call to your gp or neuro or dentist!

Hi Kc -

I'm confused. You put the mouthwash ON your face? Or are you talking about that analgesic cream? I guess I could "paint" the roof of my mouth area with the mouthwash. Sometimes I eat SF popsicles to help that pain. The cold seems to dull the burning. I suppose I could just suck on ice cubes too...lol

What I really need is something for pain sensation in the root area of a long-gone tooth (feels like a hot poker being shoved through the tooth canal). Since there's really no tooth there, I don't know that the mouthwash would help it. Allthough I think it might be a good idea to use before going for any dental cleaning. Those ALWAYS irritate everything.

Hope you're having a good day :)

Kc Dancer Kc said:

Yes the mouthwash is prescription - and people rave about it --- When I put it ON my face - it does not make it numb..... I don't know if the mouthwash is similar - calms nerves.... OR if it numbs your mouth - which could give you intermintent relief when you don't need your mouth for eating I suppose --- should be able to get it with a phone call to your gp or neuro or dentist!