The Romberg's Connection 2009 Survey Results

Comments for the symptoms still being active

Page 13. II. Rombergs Symptoms History cont.: Symptoms Still Active
1. Comments for the symptoms still being active:
I think that the hole in my face it gets bigger and the part of the face that is affected it's getting bigger.
My symptoms appear to be slowly active in respect to the slow deterioration of the health of my eye, in terms of the vision, and the dryness of the cornea and double vision. All are caused by Parry-Romberg.
In looking at my optic nerve, we can see that the disease is still progressing. I can't tell cosmetically if it is or isn't.
I have seen through photos the affected area getting worse. Expecially in my late 30's it started off very severe.
"Hard to see the changes when we are with our son every day,
does not seem to be progressing rapidly."
My left side continues to atrophy. It is obvious especially when a new dip develops (next to left ear). The 3D Cat Scan also shows progression. I have a couple of scans to compare the progession to. My dental x-rays also show another tooth with atrophy as well as the bone disappearing. The gum recession is obvious visually.
Muscle spasm on face and jaw area
Surgery needs repeating due to fat graft in the left cheek reducing and the eye continues to become more recessed.
We are not sure if the PRS stopped or reversed, although it seems it is reversing. No longer have symptoms of facial pain and numbness since treatment.
"I still have a lot of itching on my right side of face. Strange sensations on top right side of my head and right forehead. I have noticed that the right side of my face has atrophied somewhat more."
My face itches a lot when it is active and feels like it is next to heat.
Stress and/or low immunities (general run down of health) affects whether the Rombergs becomes more active.
As far as I can tell, my symptoms have never stopped since I was first diagnosed. My most telling symptom, besides the atrophy, is itching by my right temple.
Ringing in the ears...twitching around graft, dizziness/vertigo.
You learn to live with them.
Brown streaks running from his cheek to his neck. A plaque-like scar on his cheek, where the atrophy is. Doctors said his tongue has a little atrophy too.
My face does not seem to be getting any worse but I am still losing soft tissue on my foot.
I believe I have noticed a progression in the symptons of atrophy in my forehead over the last few years. I also have continued to have jaw difficulties that I believe are related to PRS. Finally, the headaches and occasional migraine that I have experienced continue.
We are not completely sure but it seems to be deeper and one side of her forehead is lower than the other, seems to change and she still gets headaches.
Electrical impulses in my left temple. Left eye socket seems to be sinking further into my head. Legally blind in left eye, last exam vision in left eye was 20/1100.
Over the years the Rombergs area on my cheek has developed a long hard indent. My eyesight in my left eye has deteriorated much faster then my right eye.
Seems to be gradually still getting worse.
Atrophy possibly got worse during first pregnancy. Other symptoms such as SPD / arthritis type symptoms during second pregnancy, but obviously impossible to say with certainty whether these are PRS related. Left and right pupils different sizes, likely to be PRS related but again cannot be certain.
Ooop- I wrote that on the last part- sorry!
Continue to have progressive vision loss and tissue loss. Very slow. Stops and starts again.
Not sure, we think its slowed down or stopped.
As mentioned before, headaches still present, but tissue disappearance stopped/stable.
"Indentation in the forehead in the shape of a V
Several bald patches on top of the head
Recessed eye, vision affected
Indentation on the chin"
Had surgery in 1992 & 1995. PRS has been dormant for many years but I'm starting to see the atrophy start up again.
"I still become smaller all over my right side of the head - not 'only' my face, but also on the top of my head.
I have trigeminal nerve pain in affected side. It feels like far inside of my ear.
I do not know if my brain or blood pressure is affected. My blood pressure is quite low - in the perspective that I have 20 kilo over weight and smoke 30 cigarettes every day."
Still loss of eye lashes, eye ache from time to time, some re absorption.
"The cleft on my chin, my droopy eye lid and skin discolouration on my forehead and neck have worsened over the last 2 years. I've also developed a small dent above my left eye brow over the last year. When I lose weight, it happens more dramatically on my left side, particularly from my face and breast. I even have less of a 'roll' around my middle on the left side. When I had a bad flu about 18 months ago, my temperature was higher on my non-PRS side (I think about 2 degrees Celcius)."
Migraine headaches, seizures (Grand Mal) joint pain, continued wasting of parts of the face, especially under the affected eye. Her own tissue injected into that area has been reabsorbed although most of the free flap has remained healthy (cheek area).
My natural weak tissue still is disappearing. My right side gets skinnier in time. Also does my skin change color, from normal to red in an expanding area and it gets more intense red. And my eye started shedding tears and became very sensitive.
Plastic surgeon commented last fall that the left side of my face was affected. That had not been seen before.
It has been a gradual progression for around 10 years, but it is hard to say whether it is still active or not as it is so gradual. I have had 3 fat injection treatments, which also makes it hard to tell.
Ten years on very very slow progression, with periods of no progression. Illness, stress, tiredness seem to bring it on and my face gets very tingly especially in the areas at the end of the worst areas. At present it is my lips and inside my mouth that seem to be the more active areas.
"I am currently 29 this is happening to me now!!!!
These symptoms may be progressing at this point in time:
mild weakness in left arm and gradual loss of pain sensation in left leg."
Hard to tell if it is, or when it stopped and started again.
Bruising like markings have gotten slightly bigger. And more noticeable on nose and around left eye.
The atrophy on the right side of my face is very slowly getting worse. I do get pain through my right eye and some neuralgia on the affected side, but it's not too bad really.
Degradation of facial symmetry continues in a very slow fashion.
My symptoms started only in the last year, and are progressing quickly on my face.
"The PRS seems to have accelerated in the last decade. It is now migrating down my neck and I have a sunken spot in my skull (but still hair there). I lost hair over my affected ear and almost all muscle tone there. I'm starting to lose muscle around my eye and more around my mouth. I chew my lips sometimes when chewing. And my jaw is starting to pop and grind, but without pain. I'm currently taking Prednisone and Methotrexate and the pain in the jaw area has been eliminated, though the deterioration still continues."
I now am still experiencing twitches in my right cheek, macular degeneration on my right eye, just had that operated on 4 months ago, I am also getting headaches again and have poly neuropathy which my neurologists claim has come from the Rhomberg's.
Symptoms agressively active currently.
"Atrophy still occurring, continual eye problems, have double vision looking in a certain direction, have flashing lights, have dry eyes with blurred vision, have balance problems."
Atrophy on right side of his throat /neck.
Have bruised sensation from time to time in chin area, where changes are.
Symptoms are not still active.
The same symptoms as reported.
There appears to have been some further progression in the last five to eight years - the left eye seems deeper (more difficult to insert a contact lens on that side), and there also are further changes along the left side of my nose and chin. Perhaps unrelated, about two years ago, following a severe headache, I noticed my pupils were different sizes, which continues to this day.
Tissue wasting away, also diagnosed with hypothyroidism - hair loss not sure which one is causing that. Have headaches.
Number responding = 56 / percent responding = 39% 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.