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 consultation with one's personal physicians. 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. However, we are presently working on a listing of doctors with Rombergs experience.

All photos and text are the property of the families represented, and may not be used without their consent.

This is Judy's Parry-Romberg Storymouther...

My name is Judy. I am 37 years old. I was diagnosed with Rombergs in January, 1995. Based on my personal recollection, on photographs, and on the presence of the coup de sabre, the doctors I've seen figure the Rombergs started when I was very young, although the first time I was aware of any symptoms was at age 9. The right side of my face is affected; both the bone and the soft tissue.

For me, the first manifestation of Rombergs was a strange, sort of ache-y itchiness along the middle of my skull when I was about 9 years old. Next, at age 12, my right upper lip started to vanish. I have what a plastic surgeon would refer to as "a whistle," an absence of tissue on the upper right side. Since I had braces on my teeth at the time, and was active in sports, I thought I had injured my lip and that it didn't heal properly.

The ridge between the two halves of my forehead is REALLY pronounced now -- I think it started getting noticeable when I was about 19 or 20.

At about this same time, I started having all sorts of jaw problems. My jaw was actually out of joint for about 16 months. Then some years back I started having uncontrollable muscle spasms on the right side of my face in my temporomandibular (jaw) joint. It got so bad that I would literally have to physically pry my jaws apart to break the spasm, and my molars were starting to crumble because of the awful, constant spasm-ing. It also gave me a constant earache. I now get regular "BoTox therapy" to prevent the spasms.

In the summer of 1981, I took a physical anthropology class, and the professor for the class was well-known in the community because of his work in forensics, particularly for his work on the Ted Bundy case. At the end of the term, I asked if he would check out my skull. He said he'd never felt or seen a skull like mine, and thought, perhaps, that as a child, the bones in my skull along the Metopic suture (where the frontal bones meet) did not close correctly, but fused with a slight overlap that caused the ridge down the middle of my forehead (craniosynostosis). For 14 years this is what I thought was wrong with my skull!

Skull sutures

Aside from the muscle spasms and the cosmetic issues, I have terrible migraines that I am told are associated with the Rombergs. I have had periodic migraines as long as I can remember (i.e., before I was 9). About 3 years ago, they started to increase in frequency: I was getting at least 2-3 killer migraines a week. Rather than choosing to walk around with an industrial vice fastened to my head, I went to a neurologist instead, and things are somewhat better for me now -- I'm down to 4 or 5 really nasty ones each month.


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Judy's Story

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All photos and text are the property of the families represented, and may not be used without their consent.