The Romberg's Connection 2009 Survey Results

Symptoms Are Not Active

Page 15. II. Rombergs Symptoms History cont.: Symptoms Are Not Active
1. At what age did the symptoms appear to become inactive?
   Age    Responses
% of Number responding
45 - 491
40 - 441
35 - 393
30 - 342
25 - 293
20 - 249
15 - 199
10 - 149
5 - 96
1 - 41
Not Sure5
Number responding = 49 / percent responding = 34% of total respondents (143).

Page 15. II. Rombergs Symptoms History cont.: Symptoms Are Not Active
2. Please comment as to why you think the symptoms ceased:
I believe this related to the end of puberty.
No tissue left in the affected area - otherwise no idea.
The symptoms appear to be the same as they were at age 22. The bald spot on my scalp never grew after its initial appearance. However, only time will tell if the atrophy will continue.
Symtoms seem to have slowed down / inactivated since micro vascular free flap tissue transfer.
By that time, there wasn't much facial tissue left to atrophy away.
No more surgeries and the doctor said it appeared that they had stopped.
I believe for me it has run it's course.
I was told by doctors that PRS had a 'lifespan' and I think that is what happened.
No idea.
End of puberty?
Following surgery there was no advancement. Suffered severe migraines but that was put down as related to something else. One side of face slightly lower than other but all else ok. Had more plastic surgery to "tidy things up" and then basically forgot about it until last year when dentist asked when I last had it checked. Being that it had been over 15 years, went to the oral surgeon. He thinks they stopped advancement by removing when it was active. And after all this time, gave it a clear diagnosis.
We have no idea why the seizures ended at age 12 (my parents said it was prayer) but my face continued to change until age 17.
"No idea. I did not know what I had, so I wasn't aware of the fact that it was 'going on' or 'had stopped'. Thought it was because of an accident that I had at age of 9 that my chin, lip and tongue did not grow anymore from that age on. Now I know it is PRS, I try to remember and I think it did stop when I was about 20 years and started again when I was about 38. This seems to be related to early climacterium. I noticed this because of the irritating tingling."
I stopped growing.
Not sure why, was told this is what normally happens or can happen.
Not sure.
No idea.
It doesn't seem like it's gotten any worse over the last few years...............might have stopped a few years after the diagnosis.
Following steroid infusion and currently taking 12.5mg methotrexate weekly.
18 years - I was told that this is when the symptoms usually stop. Since I was just diagnosed this year I'm not quite sure however. I just learning about Rombergs so I'm not sure about the other symptoms ie headaches etc.
Symptom: Iridocyclitis had been treated with eye drops containing cortisone to suppress inflammation. Since age 9 our daughter was treated with Methotrexate (MTX). 5 month later the medication of eye drops was stopped. The inflammation didn't return.
After the first two surgery's I had, it slowed down. At age 22 when I had my third surgery, it stopped all together.
"Less stress - finished uni - puberty passed - hormones should be normal."
Dr. Mintz did the bone test and xray to makes sure the bones had stopped prior to surgery.
Symptoms ceased when I had a microvascular free flap transfer.
The syndrome "ran its course".
Ayurvedic treatment
The doctor said it's the nature of the symptom to stop at the mature age.
When I was 14 the plastic surgeon who did the diagnosis said he could start doing liquid silicone injections because the Rombergs had stopped progressing.
I had silicone injections inplanted as part of a medical trial in San Antonio,TX. These injections were helpful for about 25 years , I got silicone poisoning and had the silicone scraped out of my face and had fatty grafts implanted to build my face back up.
Unsure if the symptoms have ceased or not.
No idea!
Not known
Number responding = 34 / percent responding = 24% 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.