The Romberg's Connection 2009 Survey Results

Atrophy (tissue loss)

Page 18. III. Associated Symptoms (page 1 of 4) cont.: Atrophy (tissue loss)
1. Please select the location of Atrophy (tissue loss) on the head:
Location Responses
% of Number responding
Eye lid62
Lower lip37
Upper lip64
Number responding = 130 / percent responding = 91% of total respondents (143).
Note: This was a multiple choice question.

Page 18. III. Associated Symptoms (page 1 of 4) cont.: Atrophy (tissue loss)
2. Other locations of the body with Atrophy (tissue loss):
Location Responses
% of Number responding
Other (Specify) 14
Number responding = 45 / percent responding = 31% of total respondents (143).
Note: This was a multiple choice question.
This chart has a link to additional information.

Page 18. III. Associated Symptoms (page 1 of 4) cont.: Atrophy (tissue loss)
3. Please rate the severity of this Atrophy (tissue loss):
Rating Responses
% of Number responding
1 (very mild)3
2 (mild)28
3 (moderate)57
4 (severe)30
5 (very severe)10
Number responding = 128 / percent responding = 90% of total respondents (143).

Page 18. III. Associated Symptoms (page 1 of 4) cont.: Atrophy (tissue loss)
4. Comments for Atrophy (tissue loss):
It is moderate in my leg but severe in my arm and face.
Body atrophy may be that the body never developed properly. Body atrophy is severe. Facial atrophy is mild.
First aware of atrophy at the age of 19 in my right breast.
Cheek followed skeletal line of face (no tissue left).
I would like to get something done to my face (filler, etc.), but I think that the disease is still active.
From age 11 onward, atrophy became much more noticable and tissue loss very significant- especially from mid cheek area on left hand side.
The whole side of my left face is sunk in because there is no fatty tissue there and it looks bluish at times.
What can we say it happens and there is no stopping it. You just have to go through with it. The symptons do stop for a while before they start back up again.
Continued atrophy of the chin.
Can't be positive that I have tissue loss of the leg and back due to PRS, but it seems odd that I have muscle problems on the left side of my body in these areas.
It's only skin and bone under my eye and you can feel the articulation under my chin and I have like small balls in the flesh that are hard but not all the time.
I feel that mine is still progressing. I can almost see a slight change in my forehead and cheek weekly.
The atrophy started with just tissue loss but then moved to bone loss in lower right jaw and tooth loss on lower right side.
Don't know what is considered mild or severe, so I said moderate.
Skin on back area is very thin & you can see the veins through it. Very little tissues under cheek area.
It seems the atrophy progressed rapidly as son approached puberty. I know that PRS is less common in males and therefore don't know if this experience w/puberty is common among other male patients. From my reading of other's emails, it seems that many females affected by PRS discuss increase in symptoms during pregnancy and/or menopause. Seems to be a hormonal link.
The top of my head is moderate to severe, but nobody sees that. My face is mild.
Since the tissue loss has just started, I would say it is moderate, but progressing rapidly.
Atrophy of entire left side of head including bone.
They say I have no tissue on effected side, and almost no bone mass there. Also I have little motor skills on that side of my face.
My atrophy is a lot worse now than it was when I was first diagnosed. It has spread further towards the back of my head and is also worse in the forehead.
Severe atrophy on the cheek.
On forehead, it is en coupe de sabre.
I still today get very upset when someone makes a comment about my face, people can be very cruel.
I feel it is severe, but compared to others I have seen, probably moderate.
Atrophy loss means that there is also skin discoloration which is very difficult to conceal or correct. Eye muscle loss leads to double vision and eye drooping lids and other eye complications that are not easily resolved.
Severe atrophy of forehead and scalp.
Very severe at the injury site at the top of my forehead, the loss is down to the bone. In the rest of my face it is only moderate to very mild with tissue loss and it isn't noticeable until it is pointed out.
Loss of tissue is mainly around the chin and cheek area.
Moderate to severe in some areas (under the affected eye).
The places where I have less fat (e.g. my neck) are harder to see the atrophy.
Due to surgery hard to say the severity of atrophy.
I have had two fat injections into the right side of my face.....side of face, cheek, and chin. First set of injections in June 2008 in hospital under general anesthesia. Quite a bit of fat was reabsorbed. Second set in January during in-office procedure.
The atrophy makes it much more painful, if the affected side of my face is ever hit by anything (accidentally!). It also feels the cold much more.
Am not sure if I'd be mild or moderate. The odd thing is, given that they know so little about this, it really doesn't provide relief when they say they think it's mild b/c it keeps on going and no one knows how long it will go or how far it will go. It would help to know if not-mild cases generally have aggressive onset or if they all start out mild and then progress to greater stages.
Other areas may be affected but to a much lesser degree. I've only mentioned the moderately affected areas. Mouth has also been affected; roof of mouth is deeper on the left, tongue is thinner on left, gums receding on left.
My plastic surgeon, Dr. Mitchell Stotland of Dartmouth Hitchcock Medical Center in Lebanon, NH says that my atrophy is mild to moderate and that he's seen worse. Looking at a picture of myself that I took last night, that is hard for me to believe. I'm sure that he knows what he is talking about. I'll have to post the picture on the Romberg's Connection site as an updated one.
I would say it is moderate to severe. Has lost all tissue in his cheek. As his mother, I think it is severe....doctors would probably say moderate.
My eye has sunk and the area under the right eye is darker. The area in front of the ear was noticed first and the other side of my face was scanned for a tumour, because it was much plumper, particularly around the sinus area. However Dr Landy in Brisbane, an elderly neurologist, had come across hemifacial atrophy before and quickly diagnosed it. I have not had an MRI in seven years, so I do not know if the brain has atrophy. There were strange white spots on my MRI though.
Affected area is darker compared to the non affected area.
My daughter was in a researh program at New York University.
I have fillings with permanent material in my cheek but I think I have no natural fillings (fat tissue) left. Its just skin over bone on my jaw joint.
I had a face lift when I was 40 years old.
Loss of roots of teeth.
I also had tissue loss around the eye socket.
It doesn't bother me that much and I've seen much worse on some of the pictures from the group.........but the CAT scan of my head shows hardly any fat at all on the left side of my face. I have a narrow face anyway, so i guess it doesn't stand out as much....I have like a pit, in my cheek and ruts and grooves in my chin.
Severe loss, resulting in facial disfigurement, until surgery, which restored the tissue, but eventually reasorbed and back to moderate atrophy.
Number responding = 48 / percent responding = 34% 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.