Has anyone done this TN patient Diagnostic Questionnaire to give to thier care givers?

QUESTIONS & ANSWERS:
Number Answer Question

1 Yes Do you have facial pain?

2 No Do you remember exactly where you were the moment your facial pain started?

3 Yes When you have pain, is it predominantly in your face (i.e., forehead, eye, cheek, nose, upper/lower jaw, teeth, lips, etc)?

4 Yes Do you have pain just on one side of your face?

5 Yes When you have pain, is it predominantly deep in your ear?

6 No When you have pain, is it predominantly in the back of your throat or tongue, near the area of your tonsil?

7 No Is your pain either entirely or mostly brief (seconds to minutes) and unpredictable sensations (electrical, shocking, stabbing, shooting)?

8 No Do you have any constant background facial pain (e.g., aching, burning, throbbing, stinging)?

9 No Do you have constant background facial pain (aching, burning, throbbing, stinging) for more than half of your waking hours?

10 No Do you have any constant facial numbness?

11 No Can your pain start by something touching your face (for example, by eating, washing your face, shaving, brushing teeth, wind)?

12 Yes Since your pain began have you ever experienced periods of weeks, months, or years, when you were pain-free? (This would not include periods after any pain-relieving surgery or while you were on medications for your pain.)

13 No Have you ever taken Tegretol ® (carbamazepine), Neurontin ® (gabapentin), Lioresal ® (baclofen), Treleptal ® (oxcarbazepine), Topamax ® (topiramate), Zonegran ® (zonisamide), or any other anticonvulsant medication for your pain?

14 No Did you ever experience any major reduction in facial pain (partial or complete) from taking any of the medications listed in Question 13, or any anticonvulsant medication?

15 No Have you ever had trigeminal nerve surgery for your pain? (e.g., neurectomy, RF rhizotomy/gangliolysis, glycerol injection, balloon compression, rhizotomy, MVD, gamma knife)

16 No Have you ever experienced any major reduction in facial pain (partial or complete) from trigeminal nerve surgery for your pain? (e.g., neurectomy, RF rhizotomy/gangliolysis, glycerol injection, balloon compression, rhizotomy, MVD, gamma knife)

17 No Did your current pain start only after trigeminal nerve surgery (neurectomy, RF rhizotomy/gangliolysis, glycerol injection, balloon compression, rhizotomy, MVD, gamma knife)? (If this is a recurrence of your original pain after a successful trigeminal nerve surgery, answer “no”)

18 No Did your pain start after facial zoster or"shingles" rash (Herpes zoster - not to be confused with “fever blisters” around the mouth)?

19 No Do you have multiple sclerosis?

20 No Did your pain start after a facial injury?

21 No Did your pain start only after facial surgery (oral surgery, ENT surgery, plastic surgery)?

22 Yes When you place your index finger right in front of your ears on both sides at once and feel your jaw open and close does the area under your fingers on either side hurt?

DIAGNOSIS:
Based on your yes/no answers to the Facial Pain Questionaire developed by Kim J. Burchiel, M.D., your predicted facial pain diagnosis has been assessed as trigeminal neuralgia Type 2 (TN2)

Here is the link for those who are interested: https://neurosurgery.ohsu.edu/tgn.php

Hello Beccy,

Yes, it is a good diagnostic questionnaire for those pretty much already diagnosed with one of the trigmeninal neuralgia variations. The trigeminal nerve is the 5th and largest cranial nerve out of 12 possible cranial nerve sets.

As I’ve mentioned previously, it is not always trigeminal neuralgia (tn), and though I do not discourage you from researching your own symptoms, I do want to advise you of the dangers of self-diagnosis in this setting.

Just so you know, the diagnostic questionnaire does not take into account other cranial based neuralgias, of which there are many - you’ll find quite a few here also have conditions other than just TN such as these and to just mention some to you there are:

  • Trigeminal Neuralgia (ear pain as a symptom)
  • Geniculate Neuralgia (ear pain as a symptom)
  • Occipital Neuralgia (ear pain as a symptom)
  • Glossopharyngeal Neuralgia (ear pain as a symptom)

Remember, I am not trying to discourage you Beccy, I really hope that you get an accurate diagnosis soon - just want you to not focus on one issue. An important aspect to remember about facial pain is that stress is a trigger that can set off more pain. For now, I would hope you would concentrate on one step at a time, and try and stay as relaxed as possible to avoid causing yourself pain.

If you’d like further reading on cranial nerve disorders in general, I reccomend this site here: http://www.umanitoba.ca/cranial_nerves/ccndhomenetscape.htm as it has a lot of great detail about the different possible cranial nerve disorders. Just remember, I know you have anxiety over not having a name to give your pain - we all go through this, so when you discuss your symptoms with your doctor, be honest - to the point, yet use words that can also describe the type of pain sensation you get. This does help the doctors make diagnostic evaluations.

Best Wishes again Beccy, I hope you’re having a good weekend! Give that cute Jack Russell pup some exercise - it’ll help relax you too! :slight_smile:

Cheers ~ Kerry xx

Hello Kerry,

Thanks for your thoughts.

Yes - dont worry, Im pretty careful with what I read and I dont. Im not assuming this is what I have, but it feels like it might fit. I just try to gather as much info as I can, I don’t take it to literally though. My next step is the MRI and MRA and hopefully I can get that done next week.

My skull is totally compacted … so … having a nerve, of some description … being squished or pushed makes some sense to me. Well, more scene than some other options.

Dr’s have treated me horrifically over the years so its up to me, myself and I - to get my self sorted in almost all cases. So I try to load myself with as much information as I can so I can be informed and know what questions to ask when I see the Dr’s.

I also have looked in to TMJ, Impacted Wisdom tooth, cluster headaches and such. Read read reading! lol

Thanks for that link above! Will defiantly have a look at that tonight!

Toot-a-loo!

Hi Beccy,

For more information, I also suggest getting in touch with Mrs Irene Wood, she is the president of the Trigeminal Neuralgia Association, Australia. I believe she too is based in Sydney. Here are her contact details and the website for TNA Australia below - the website also containing details of face to face support groups - 2 of which are in Sydney. One in the CBD, the other Sydney West.

For more Information, please contact:

http://www.tnaaustralia.org.au

Irene Wood
P O BOX 1611,
CASTLE HILL,
NSW 1765
Australia

Tel: 02 4579 6226

Email: ■■■■■■■■■■■■■■■■■■■■ or ■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■


Believe me, I do know what you are going through - and I appreciate the need to be informed. Knowledge is key in these things sometimes, and if your doctors have been this awful to you in the past - it is understandable to want to arm yourself with foreknowledge so you do know the questions to ask of your doctor. I’m glad to hear that your research is helpful to you in this way! With disorders such as these - it is not uncommon for doctors to also under diagnose certain conditions - as a personal note - I was not diagnosed for about 12 years - and even after diagnosis - had specialists who said I couldn’t possibly have TN cause I wasn’t old enough. Age is irrelevant when it comes to illness. Another doctor dismissed me saying I was bothering him - he had no idea what was wrong with me, referred me to a psychiatrist and was told not to come back. Had many teeth removed unnecessarily and so on … There are many more awful stories. Some people are lucky to find a doctor right away that knows exactly what they have - and many more are like us - will remain undiagnosed for some several years. So, believe me when I say - yes I do know how you feel.

Best of luck Beccy, let me know if there’s anything I can do to help out a fellow Aussie if needed.

Cheers ~ Kerry xx

thanks for that diagnostic tool link, I filled it out and TN1, which is what I expected, but I thought it was a good tool.

from my experience it helped to have the MDs diagnosis, just so that I didn’t think I was imagining all of the pain. I tried a med, but hated the side effects so much that I came off and have been “relatively” pain free for over 6months. I think the tegretol reset my system, so to speak.

also TN does come and go, prior to my diagnosis I thought back and realized I had had this pain a couple of times in life each with about 6 - 8 years in between. With that in mind once over this hurdle I decided to stay off the meds until I need them, as it could be 6 years before a long lasting pain bout started.

anyway, I wish you well and hope you find the answers that you need
Lizzie