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Last Updated 09/15/06
 
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FACIAL PAIN SURVEY

"STOP, LOOK AND LISTEN"

©Copyright 1998 by Mary Rose Whitney

The following survey should not be confused with a facial neuralgia survey developed by Jakke Makela, Leslie Carroll, Polly Potter and volunteers from the TN-L mailing list in 1996-97.  That survey was never distributed and was incorporated into a new Facial  Pain Survey being distributed by the Trigeminal Neuralgia Association. The TNA survey will establish a National Patient Registry to compile information on the history and treatments of facial neuralgia disorders. To participate in the TNA   project,  

Visit the TNA Facial Pain Survey website
or   

Contact:

Trigeminal Neuralgia Association
P.O. Box 340
Barnegat Light, NJ 08006
Patient Information 
Phone:  (904)779-0333 
Facsimile: (904) 779-7681 
Email: tnainfo@aol.com

Please include your mailing address in any correspondence so the survey can be sent to you.

DISCLAIMER:  In no way does this survey constitute nor convey specific medical advice. 

Below are the results of the objective part of an Internet survey on Facial Pain conducted during the spring of 1998 by Mary Rose Whitney and Joyce Sullivan. There were a total of 130 participants, most of whom belong to TN-L, an internet mailing list for people with trigeminal neuralgia and related facial neuralgia disorders.

This is an attempt by the authors to shed light on sources of facial pain. While some causes have been identified (compression, MS), many fall into the category of unknown. This often leads to protracted periods of frustrated searching for a solution. This research is often peppered with conflicting professional opinions. While this survey in no way is meant to serve as a solution, its goal is to heighten awareness in an often denied source of facial pain.

Included in this survey are questions pertaining to dental procedures, MVD (microvascular decompression) and other TN (trigeminal neuralgia) surgical procedures. The primary goal of the authors is for the Health Care Provider to "STOP, LOOK AND LISTEN" so unnecessary dental and medical procedures are not undertaken.

Not all of the questions were answered, so the total for each question may not total to 130. All percentages for responses are calculated on the number of participants for EACH INDIVIDUAL question. Editorial comments appear in italics.  We estimate the figures are accurate at better than plus / minus 5% at the 95% confidence level. While this survey may not satisfy rigorous scientific standards, we feel the results are worth publishing and may provide useful information to facial neuralgia patients and researchers. Perhaps in some small way through diligence, awareness and hope, a light may shine and shed some answers to these very painful disorders.

If you have any questions or comments, please send them to infiniti@flash.net.

 

Facial Pain Survey Results

March 1998
Question Response Percent
1. Have you been diagnosed with:
  TN 75 60%
Atypical TN 17  13%
Atypical Facial Pain 16 13%
MS 3 2%
TMJ 2   2%
Other  
  • Glossopharyngeal Neuralgia.
 5 4%
  • Occipital neuralgia
 4 2%
  • Injury-induced Neuropathy via lingual/alveolar nerve trauma
 2 2%
  • Myofascial Neuropathy including involvement of the sternocleidomastoid muscle
 2 2%
Total Respondents 126 97% of Total
 
2.  Who diagnosed you? 
  Neurologist 74 60%
Family Doctor 17 14%
Dentist 8 7%
Neurosurgeon 7 6%
Other  
  • Ophthalmologist
 4 3%
  • Pain Center / Anesthesiologist
 4 3%
  • Dental Pain Center
 3 2%
  • Otolaryngologist  (Ear, nose, throat specialist)
 2 2%
  • Osteopathic Physician
 2 2%
  • Self diagnosis from information found on the Internet and later confirmed by a physician.
 2 2%
Total Respondents 123 95% of Total
    
3. Had you received dental treatment prior to the onset of your pain?
  Yes 74 59%
No 51 41%
Total Respondents 125 96% of Total
 
3a. Type of anesthetic administered
  Local Injection 62 81%
No anesthesia 7 9%
IV 5 6%
Laughing gas 3 4%
Total Respondents 77 59% of Total
   
4. If you marked YES in question #3, what type of dental procedure did you have?
     Root Canal 22 30%
Tooth Extraction 11 15%
Teeth Cleaning 11 15%
Crown 5 7%
Oral Surgery 4 5%
Periodontal (gum) Surgery 2 3%
Bridge 2 3%
Apical surgery 1 1%
Other    
  • Amalgam Fillings
 7 9%
  • Root tip amputation
 4 5%
  • Implants
 3 4%
  • Gore-tex Surgery
 2 3%
Total Respondents 74 57% of Total
 
5. Did you have this type of pain prior to the dental procedure?
     No 37 43%
Yes 32 37%
No, but experienced different pain after the procedure. 17 20%
Total Respondents 86  66% of Total
 
5a. Describe how your pain feels.
    Electrical 50 47%
Jabbing 17 16%
Other            
  • Jabbing with electrical shocks
    (Comment:  all 12 respondents have been diagnosed with trigeminal. neuralgia)
 12 11%
  • Gnawing, pulling, sharp, sparky, jabbing
    (Comment:  all 12 of these respondents were diagnosed with atypical trigeminal. neuralgia. The gnawing, pulling-type pains are constant while the "sharp," "sparky," "jabbing" pains are intermittent.     8 of the 12 respondents listed onset o by intraoral triggers i.e, swallowing, talking and chewing.
 12 11%
  • Aching, cramping, tight, vice-grip
    (Comment:  all diagnosed with atypical facial pain)
 6 6%
  • Constant pinching, cold, bee sting, numb
    (Comment:  all 10 were diagnosed with Anesthesia dolorosa - 5 respondents were also diagnosed with trigeminal neuralgia)
 10 9%
Total Respondents 107 82% of Total
 
5b. Which side of the face is your pain located?
     Right 64 52%
Left 55 45%
Both 4 3%
Total Respondents 123 95% of Total
 
6. Did the dentist redo the dental procedure or another procedure to alleviate the pain
  No 54 61%
Yes 35 39%
Total Respondents 89  68% of Total
 
7. If you answered YES to #6, was the pain relieved?
  No 21 51%
Yes 2 5%
Worse 18 44%
Total Respondents 41 32% of Total
 
8. If the pain was not relieved, did the dentist refer you to a physician?
  No 43 61
Yes 28 39
Total Respondents 71 32% of Total
 
9. How long before were you diagnosed with TN / ATN after the dental procedure?
  Less than 6 mos. 37 45%
6–12 mos. 10 12%
1-2 yrs 11 13%
2 - 4yrs 20 24%
Longer than 4 years 5 6% 
Total Respondents 83 64% of Total
 
9a. How many physicians and / or dentists did you see before you were diagnosed with TN / ATN?
  1 19 15%
2 - 5 68 55%
6 - 9 19  15%
10 - 20 12 10%
20 - 30 2 2%
more than 30. 4 3%
Total Respondents 124 95% of Total
 
9b. What was your age at time of diagnosis?
   0 - 9yrs 0 0%
10 - 19 1 1%
20 - 29 14 11%
30 - 39 37 29%
40 - 49 54 43%
50 - 59 17 13%
60 - 69 4 3%
70 years or older 0 0%
Total Respondents 127 98% of Total
 
10. Were you diagnosed with another problem, such as NICO Syndrome?
    No 107 92%
Yes 9 8%
Total Respondents 126 97% of Total
   
11. If your answer to #10 was YES, please indicate what type of physician diagnosed this condition and the treatment plan.  Indicate if this treatment relieved the pain.
     Total Respondents  6 5% of Total
  Comment: 
6 reported treatment by an Oral Surgeon.  3 of the 6 respondents were treated with exploratory surgery with antibiotics placed into the bone cavity area.  Two of these respondents had positive biopsies but negative bone scans.   These two respondents had some form of relief from pain
 
12.  Did you have teeth extracted in hopes of relieving your pain?
     No 86 73%
Yes 32 27%
 Total Respondents 118 91% of Total
 
12a. If you answered YES, did you get relief?
  No  35 100%
Yes  0 0%
Total Respondents 35 27% of Total
 
12b. If you answered NO to 12a, were the pains worse after the extractions?
  Yes  19 51%
No 18 49%
Total Respondents 37 28% of Total
 
13. If your TN or ATN / FACIAL PAIN was not the result of dental work, did you have  another surgical procedure in the facial area?
  No   88 89%
Yes
 11 11%
Comments:
Those responding "Yes,"  report pains began  after:
  - Sinus Surgical Procedure - 6
  - Facial Cosmetic Surgery - 2
  - Surgery for jaw tumor  - 1
  - TMJ surgery - 1
  - Other surgery - 1
 
Total Respondents   99 76% of Total
 
14. Have you ever had a blow or injury to the facial area?
   No 74 62%
Yes 46 38%
Comments:
40 of the 46 responding to Question 14 explained their injuries.  Of the 40 respondents, 27 have been diagnosed with Trigeminal Neuralgia, 10 diagnosed with Atypical Trigeminal Neuralgia and 3 diagnosed with Atypical Facial Pain.

Childhood/Teen Injuries
Of the 40, 14 claimed injuries as a child/teen e.g. sports-related injuries.  Two of the fourteen reported physical abuse and one claimed an arrow was shot into the eye.

All but two of these respondents had a 25 year average span from time of childhood/teen injury to the onset of their facial neuralgia pain.   The other two respondents had approximately a 12 year lapse.

Of these 14 respondents who claimed childhood/teen injuries, 10 claimed adult onset of facial pain immediately after a dental procedure. The remaining 4 do not recall what could have caused the onset of facial pain.  More than half of these respondents speculated on a possible connection between their facial/head traumas and their facial pain.

Adulthood Injuries
Of the remaining 26 respondents to this questions, 6 claim onset due to Auto Accidents. Of these six, three suffered head concussions. 
6 claim sports-related head / neck injuries prior to the onset of facial pain.  5 claim accidental injuries to the head / face area (e.g. hitting head on an object or walking into a door).  2 claimed spousal abuse. One claimed electrical shock to the face area.  One resported he/she 'suffered a seizure and passed our falling to the floor."
Total Respondents 120 92% of Total
 
15. Have you been told that you may have a jaw / Joint problem?
  No 75 62%
Yes 46 38%
Total Respondents 121 93% of Total
 
15a If you answered YES, were appropriate x-rays taken?
    Yes 36 71%
No 15 29%
Total Respondents 51 47% of Total
 
15b. Have you been fitted with a Mouth Splint?
  No 56 54%
Yes 48 46%
 Total Respondents 104 80% of Total
 
15c. If you answered YES, did the splint help alleviate your pains?
  No 40 80%
Yes 10 20%
Total Respondents 50 38% of Total
 
15d. Do you think that there is a relationship between your TN/ATN pain and that of a Jaw/Joint Problem?
  No 71 77%
Yes 21 23%
 Total Respondents 92 71% of Total
 
16. Did you take medication to help alleviate your facial pain?
  No 5 4%
Yes 116 96%
Total Respondents 121  93% of Total
 
17. Has one medication worked better than others?
  No 33 32%
Yes 69 68%
 Total Respondents 102 78% of Total
 
18. How long have you been on medication?
  Less than 1 yr. 35 30%
1-3 yrs. 35 30%
3-5 yrs. 12 10%
Over 5 yrs. 35 30%
 Total Respondents 117 90% of Total
 
19. How long have you been in pain?
  Less than 1 yr. 23 20%
1-3 yrs. 30 26%
3-5 yrs. 13 11%
Over 5 yrs. 51 44%
 Total Respondents 117 90% of Total
 
20. Have you been advised to have a surgical procedure to help alleviate your pains?
  No 64 52%
Yes 58 48%
 Total Respondents 122 94% of Total
 
20a. If you answered YES, did you have the surgical procedure?
  No 16 27%
Yes 43 73%
 Total Respondents 59 45% of Total
 
20b. If you answered YES, what surgical procedure did you have?
  MVD (Microvascular Decompression) 18 40%
Gamma Knife 7 16%
RF (Radiofrequency Rhizotomy) 6 13%
Balloon Compression 0 0%
Other 14 31%
 Total Respondents  45

35% of Total
 
21. Did the surgical procedure alleviate your pain?
  No 14 30%
Yes 32 70%
 Total Respondents 46 35% of Total
 
22. If you answered YES to #21, are you still pain free?
  No 20 56%
Yes 16 44%
 Total Respondents 36 28% of Total
 
22a. If you answered YES to #22, how long have you been pain free?
  Less than 1 yr. 6 33%
1-3 yrs. 8 44%
3-5 yrs. 1 6%
Over 5 yrs. 3 17%
 Total Respondents 18 14% of Total
 
23. If your pain returned, can you contribute the recurrence to something specific?
  No 26 72%
Yes 10 28%
 Total Respondents 36 28% of Total
 
24. Are you suffering from Anesthesia Dolorosa as a result of a surgical procedure?
  No 63 86%
Yes 10 14%
 Total Respondents 73 56% of Total
 
25. Has your physician offered any options?
  No 51 62%
Yes 31 38%
 Total Respondents 82 63% of Total
 

 
  Please e-mail comments / questions for this section of FNR to
Mary Rose Whitney
 
© Copyright 1995-2006 Trigeminal Neuralgia Resources /
Facial Neuralgia Resources