The Romberg's Connection 2009 Survey Results

Believe May Cause Rombergs

Page 110. VII. Miscellaneous Questions cont.: Believe May Cause Rombergs
1. Please comment on the health professional's theory for the cause of Rombergs:
That it could have been triggered by trauma.
Some say it's caused from the enviroments, something I was exsposed to. Some say it's because I was a very sick kid and had a low immune system. Some say it was caused from the swimming accident that triggered it.
Lyme disease
1. Dr. Tsai: Multifactoral autosomal dominant trait, with the multi-factors possibly being predisposition of autoimmune disease, trauma (even very mild trauma), disease (virus or bacteria), stress (physical or emotional) and/or hormones (either naturally occurring hormonal changes or drug induced hormonal changes such as birth control pills)
2. Vascular constriction or degeneration
Genetically predisposed
The rheumatologist I see says it is an autoimmune disease. He does not know what the trigger is. I know some members believe it is neurological in origin but my doctor disagrees with that. He seems sure it is autoimmune.
An FNP (Family Nurse Practitioner) colleague said PRS is a gentic defect effecting the CNS (Central Nervous System).
Inflammation sets off the body's response (something threw off the balanced biochemistry of the system) and we need to reset it some way.
My surgeon felt it is caused by some sort of interruption of the flow of blood to the affected area.
Perhaps x-rays taken while my mother was pregnant with me during her 3rd trimester.
My doctor has a theory that it was a connection with rabbits, but overall, there is not much known about the disease.
Trauma to the side of the face/head not affected by Rombergs.
Same as mine, there is a relationship between the illness and the injury.
One doctor said that some people were just more prone to getting it. No real cause was given.
Possible autoimmune
Trauma to the face during childhood
Pregnancy and childbirth
Overlapping autoimmune diseases
I saw a speech pathologist a few years ago and she specializes in treating stroke patients with facial weakness and asymmetry. She had pioneered the use of a microfacial stimulation unit or special exercises in treatment of this condition and had been having success.

She came up with a theory on the cause of Rombergs - It was all to do with the blood flow to the muscles. It is very complicated but at the time it made absolute sense to me but now I find it hard to put it into words so I have attached a document (previously circulated) with her theory and possible treatment. I did try the exercises but had such a weird reaction that I was wary of following through, although she thought my reaction was a positive sign. The fact that she was in a different State than me made it all very difficult. I tried to get doctors in my home State to follow through but had no luck - I would love for a doctor who is familiar with Rombergs to explore this theory and possible treatment.

Not really a cause but that it is due to the secondary nervous system - but not quite sure why it behaves as it does.
Mayo Clinic: Related to thyroid problems and/or diseases. Our family has underactive thyroid issues.
Putting a crown on a tooth on PRS side triggered it from that very day. That's what doctors believe.
Number responding = 20 / percent responding = 14% 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.