The Romberg's Connection 2009 Survey Results

Mouth Affected

Page 42. III. Associated Symptoms (page 3 of 4) cont.: Mouth affected
1. Please select how the Mouth is affected:
Affected Responses
% of Number responding
Thinning lip43
Other (Specify) 8
Number responding = 59 / percent responding = 41% of total respondents (143).
Note: This was a multiple choice question.
This chart has a link to additional information.

Page 42. III. Associated Symptoms (page 3 of 4) cont.: Mouth affected
2. Comments for Mouth Affected:
Mouth did not move on the PRS side when talking. Lower lip drawing up.
Tongue affected in that left hand side is smaller - atrophy noticable - lower lip is thinner on affected side.
Went to another consultant for the hole in the upper pallet. Said they could do nothing. I have to watch no food gets stuck into it.
Teeth very misaligned.
Right side, upper lip, thinner.
No problems eating, swallowing, or talking.
Root atrophy of upper teeth and bone loss on that side as well. I was told I would need a bone graft.
I 'grin' out of my right side.
Asthetically can't put lipstick on nicely, don't smile in photos, and in later life it is going to cause problems.
Oh yeah kids ask if you been in an accident, adults assume you have a hare lip.
see last answers
I can tell when my PRS has been active as I bite the right side of my mouth while it is active until I get used to the changes and it stops. Have had some issues with choking on my own saliva during these periods too as swallowing is affected. Drinking out of some shaped glasses is also difficult as my lips don't go around the glass properly.
Teeth cantered
sharp pains in tongue
quite often grind teeth at night
involuntarily bite tongue and cheek - like a spasm
Atrophy on the right side of my tongue.
Everything seems thinner on the left.
Palette is higher in the left side. Top lip thinning on left side.
Bone loss resulted in loss of top teeth. Need a bone transplant.
She will give details when she completes survey, I am not sure.
Lip vanishing on left side............. My cheeks are sunken in and I bite my tongue alot..................... not sure whether its a tongue problem or cheek problem.
Number responding = 19 / percent responding = 13% 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.