The Romberg's Connection 2009 Survey Results

Jaw Affected

Page 39. III. Associated Symptoms (page 3 of 4) cont.: Jaw affected
1. Please select how the Jaw is affected:
Affected Responses
% of Number responding
Atrophy of the jaw bone35
Bite that feels uncomfortable23
Biting of the tongue or cheek22
Inability to open comfortably24
Grinding teeth18
Jaw clicks24
Jaw locking19
Jaw spasms22
Limited opening26
Misalignment between upper and lower jaw30
Pain in the jaw joint20
TMJ disorder (Temporomandibular Joint in Jaw)13
Other (Specify) 7
Number responding = 57 / percent responding = 40% of total respondents (143).
Note: This was a multiple choice question.
This chart has a link to additional information.

Page 39. III. Associated Symptoms (page 3 of 4) cont.: Jaw affected
2. Please describe the steps that were taken to resolve any of these problems:
Count Responses
1 mouth guard at night
5 none
1 I had braces put on when I was 14 years old, I had them for 5 years. I still have all the problems stated above. I just recently had my wisdom teeth removed but only for impaction. My wisdom teeth did not try to come in until I was 24 years old and they where very very painful.
1 I have a botox needle every four months to stop the spasms in the jaw.
1 Regular trips to hospital to have jaw cleaned? (This did not happen until after an operation to have skin etc. taken from my scalp to fill out my chin and nose) which included being put out to have jaw opened wide etc. I stopped this several years ago when I was told that PRS had definitely stopped and now survive with the use of 2 very good mouth supports which I use when my jaw locks or goes into spasms.
1 Went to the dentist, gave me a mouth piece to use during sleep.
1 The doctors did not help me with anything. I did not receive treatment or help for it
1 reconstructive surgery to jaw and teeth
1 pain medication
1 She has had braces and reconstructive jaw surgery, Leforte osteotomy, leveled upper jaw, sagittal split osteotomy, very small mandible, moved bone from one side of chin to other.
1 With braces and the free flap, many of these symptoms alleviated.
1 I have not seen a dentist in a few years because none that I have seen know anything about PRS and they force my jaw to open. They have all said it's in my head and if you really wanted to open your mouth you could.
1 Removal of affected gum meant loss of two front teeth, bow fitted with partial plate.
surgery fixed some things
now in later life teeth are a problem.
the rest just live with
1 physiotherapy
1 Mouth guards for TMJ and appliances for opening upper and lower jaws.
1 physical therapy
1 I no longer have jaw clicks, locks or spasms. However, I did - they seem to be stages of my progression. I have 18 crowns - to correct the misalignment between my upper and lower jaw. I had a completely open bite on my affected side prior to my crowns.
1 Tried muscle relaxants when jaw spasms severe but not successfully.
1 Occipital plate - worn every night to prevent clenching, lessen the pressure on the TMJ.
Physiotherapy - once and never needed it again, jaw also stopped clicking.
1 Teeth on top were arched. Bones were cut and moved and filled in the space with bone graft and a bridge.
1 Right now nothing. She needs braces, teeth and bone implants. Missing a lot of permanent teeth on left side. Teeth are very tiny.
1 No surgeries done on the jaw. The dentist did put something on my teeth so that they would touch each other (upper and lower jaw) but it did not work.
1 face lift
3 braces
1 None yet. She needs braces, bone and teeth implants but not until she is 16 - 18 yrs. old. Missing most of left side top and bottom permanent teeth. She is compared to a 70 yr. old's mouth.
Number responding = 32 / percent responding = 22% of total respondents (143).

Page 39. III. Associated Symptoms (page 3 of 4) cont.: Jaw affected
3. Please describe if any of these steps were successful:
Steps that were taken Responses
I had braces put on when I was 14 years old,……. They helped straighten my teeth and my self esteem. I felt better afterwards because my teeth looked straight instead of having teeth that did not fit my mouth. I also had to have some teeth removed so my other teeth would have room to come in.
regular trips to hospital to have…… not fully
Went to the dentist gave me a…… A little but the jaw pain is being affected during the day, which you cannot go out in public wearing the piece.
reconstructive surgery to jaw and teeth yes
Pain medication no
She has had braces and reconstructive jaw….. All was very successful.
Physiotherapy Did not work.
mouth guards for TMJ and appliances for…. Yes, in both cases.
Physical therapy It did help with enabling me to open my mouth wider.
I no longer have jaw clicks, locks or spasms. However…. So far the crowns have been successful.
tried muscle relaxants when jaw spasms…… Bone grafting and dental implants were successful
Occipital plate - worn every night to prevent…. Physiotherapy - once and never needed it again, jaw also stopped clicking.
Teeth on top were arched. Bones were cut….. Best surgery out of all of them.
Braces on her teeth twice. not sure
face lift face was made symmetrical
Braces very successful
Number responding = 17 / percent responding = 12% of total respondents (143).

Page 39. III. Associated Symptoms (page 3 of 4) cont.: Jaw affected
4. Comments for Jaw affected:
comes and goes
I believe my jaw is progressively getting worse, potentially from PRS and potentially from normal wear and tear on an atrophied jaw. To date I have not sought treatment on it, but due to recent episodes of pain and discomfort I will have to in the future.
It's very disturbing and it limits my actions.
Since jaw affectation is mild, I've never sought remedy...I just live with it.
The atrophy in the jaw bone is mild.
I have a perforated disc in the TMJ and have to be careful when chewing food.
This is embarrasing and hurts alot.
Can not open my mouth comfortably.
Surgeon is going to try to assist my mouth in opening further.
Get unexplained pains regularly.
Mild discomfort unless cold.
Serious deterioration of jaw and tissues of area, also color above lip and area of jaw is affected.
I cannot chew on the affected side. I always chew my food on my 'good' side. Unfortunately this does not help the muscles in my affected side.
Right side of jaw will click.
Tooth root loss is significant on right side. No teeth lost yet but dentist thinks it is inevitable.
Missing or thinning of jaw bone.
Number responding = 16 / percent responding = 11% 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.