The Romberg's Connection 2009 Survey Results

Facial Pain

Page 31. III. Associated Symptoms (page 2 of 4) cont.: Face Affected
1. Describe the location of this Facial pain:

Responses (43)
above lip, jawline, head
all of the affected side
All on the affected side from the head to the jaw bone.
Anywhere along the line of the indentation. Also, in the left cheek (wondering recently if there is a problem with the left sinus).
cheek and upper lip
cheek area, eye, ear
Down side of face close to ear and temple, shooting pain up the side of my face.
During headaches, affected face part is sensitive.
extreme sharp pain in jaw jaw spasms
eye and under check bone
facial pain on Romberg side only
forehead twitching, weakness when chewing for long periods
forehead, around nose, and above lip
forehead, eye area
forehead, eye and nose area
Happened in my teens and 20s, especially tight jaw.
in cheek, jaw, it aches, throbs
In my cheek bone area down into my jaw, but it is not a constant pain for me.
It affects the whole area but not all at the same time.
It's like having headaches like something is growing... or sometimes like I've been hit with something in the face, it's not in fixed points, it's all over, the pain radiates.
Its not really pain, but more odd sensations which are around the nose and under the eye and spread towards the ear on the left side....sometimes radiating down towards the mouth and chin. I don't know the answer to the next question, so I'm gonna leave it blank!!
jaw
jaw - TMJ cheek area neck pain on affected side 'pain' in teeth migraines sensitive scalp - mostly where the 'dent' is
jaw pain and discomfort
left temple, cheek
mandible, muscle spasms
mild pain on the cheek occasionally
My whole head is hurting if I lay on it or put it to my hand when I am writing or reading for example. And it hurts all over if it is cold.
not sure
numbness on side
Occasional facial pain occured during early years of condition - described as headache - very intense pain 'shooting' down left cheek area.
Occasional pain mainly in cheek area.
on the right jaw line
pressure like someone is pushing on it and hurts from the cold
right side
right side of the face - at first it was taken for TMJ pain
scalp on the area of lost hair forehead chin
Sometimes pain on forehead and jaw area of affected side.
Started as trigeminal neuralgia. Would go on and off. Ignored it for awhile, then was told I probably was grinding my teeth. Noticed jawline changing a bit on right side where pain had been. Have had pain in chin area where current changes are.
tingling and numbness
top of cheekbone to ear
Very short and sharp and on many different parts of the face and head - not debilitating like a migraine. Also get pain in the tongue.
whole right side of face

Number responding = 43 / percent responding = 30% of total respondents (143).

Page 31. III. Associated Symptoms (page 2 of 4) cont.: Face Affected
2. Is the pain triggered from the trigeminal nerve?

Triggered

Responses
(25)

% of Number responding

Yes

72%

28%

Number responding = 25 / percent responding = 17% of total respondents (143).

Page 31. III. Associated Symptoms (page 2 of 4) cont.: Face Affected
3. Any medication or procedure that stopped this facial pain:

Count	Responses (24)
1	Acupuncture has completely corrected facial pain and muscle movement is back.
1	Analgesics periodically during that phase.
1	I can manage without medicine so far.
1	I do not know the answer to number two above. I am not aware of any medications that stop the facial pain. Usually it is a discomfort rather than a pain. My daughter uses over the counter Advil or Tylenol. Re: #5 below - it varies from very mild to moderate. That is my understanding as her mother.
1	I have adopted acupunture successfully.
1	I just use ibuprofen for mine it is a very mild pain.
1	I take Lortab which makes it tolerable.
9	no
1	Not at this stage.
1	Not severe enough to need any.
1	not sure
1	Nurofen
1	over the counter
1	Tamal Pax Paracetamol Voltarin
1	Tylenol
1	Vicodin can take the hard edge off the pain. Darvocet doesn't work as well as Vicodin. I think the pain runs its course, irrespective of pain meds. One of the difficult things about the pain is that there's no way to know when it will come on, how severe it will get, or how long it will last (anywhere from a few minutes to a week, or longer in rare incidences). There can be a reprieve from pain for a couple hours to a couple weeks. I never know how this will be. I have noticed in the past couple years that there does seem to be a link with ovulation (and sometimes menses) and 'dent' headaches. This is almost always the case. Although the onset of 'dent' headaches are not limited to ovulation. I have Poly- Cystic Ovarian Syndrome and didn't start having regular cycles until two years after my son was born. I'm somewhat new to the world of regular menstrual cycles and that's why it's taken me this long to figure out this pattern. Another correlation I've made the past couple years is that of weather changes (atmospheric pressure) could be a factor in onset of 'dent' headache pain.

Number responding = 24 / percent responding = 17% of total respondents (143).

Page 31. III. Associated Symptoms (page 2 of 4) cont.: Face Affected
4. Please comment on effectiveness of this medication or procedure.

Medication or Procedure	Responses (9)
Acupuncture has completely...	Acupuncture and acupressure were/are extremely effective for muscle movement and pain. We can consider it back to "normal."
Vicodin	Effective in taking the hard edge off the pain, but does not eliminate it.
Nurofen	gives some relief
Analgesics	Good effect - this type of pain occured at irregular intervals and has since abated.
No	I don't have any comments.
Ibuprofen	It works for me.
Tamal	Medication works for a while and then pain returns.
Tylenol	N/A
None	none

Number responding = 9 / percent responding = 6% of total respondents (143).

Page 31. III. Associated Symptoms (page 2 of 4) cont.: Face Affected
5. Rate the severity of this facial pain:

Rating

Responses
(43)

% of Number responding

1 (very mild)

2 (mild)

40%

3 (moderate)

40%

4 (severe)

12%

5 (very severe)

Number responding = 43 / percent responding = 30% of total respondents (143).

Page 31. III. Associated Symptoms (page 2 of 4) cont.: Face Affected
6. Comments for Facial Pain:

Responses (17)
can be very aggravating
Cold weather is very painful. Day to day there is a sensation of 'tightening'-slight pain.
Comes and goes. Somtimes worse than others.
Facial pain is anywhere from mild to very severe. It is a major factor in the quality of my life.
Have had surgery so these can also be from that. I don't recall any pain prior to surgery.
I don't know what nerve tiggers it. It comes in bouts. I may not get it for months, then I get it for 3 days in a row! Sometimes it seems to be connected to stress, but sometimes it just comes on when I'm not feeling stressed at all! It also sometimes comes on when I eat nuts or tough food (which I try to avoid now).
I try to take little notice of it and give it a rub now and then. I can't talk on the phone for long using the right ear as my face just burns!
It comes and goes, makes it worse by the biting of the jaw.
It would come and go.
moderate but frequent
not sure
Pain generally constant. Seems worsened by fatigue.
Pain may be due to microvascular free flap procedure.
Pain only occasional, when I'm overly tired.
See above. These questions are difficult to answer. Sometimes you don't have a choice that fits best.
The pain occurs in unregular periods. In this pain-period the severity is moderate to severe (touching the affected area makes the pain worse).
Usually I have it when I'm in my best moment, it's starts suddenly and that way stops too.

Number responding = 17 / percent responding = 12% of total respondents (143).

Disclaimer: Please be advised that everyone's experiences may be different and appropriate treatments may vary. Any medical information that you find on The Romberg's Connection website must NOT serve as a substitute for a consultation with one's personal physician. Our visitors should discuss any specific questions or concerns they may have about Rombergs with health care professionals who are familiar with the specifics of their special case.

As a support group, The Romberg's Connection is unable to offer medical advice to anyone.

Throughout this survey, when we use the term "Rombergs" or "Romberg" we are referring to: "Parry Romberg", "Parry Rombergs", "Parry Romberg Syndrome" and "PRS".

This is an unscientific survey designed to gather information from those who must deal with Rombergs on a daily basis.