My name is Debbie and this is my story.
January 24, 2012

My name is Debbie, I am 43 years old, am married, and have five children. I was diagnosed with Parry Romberg almost two years ago.

I have read everyone's stories on the site, and most everyone seems to have had signs of the disease in childhood. I don't believe that I did. I'm sure that I didn't have any signs of facial atrophy, but I can't say how many years I have lived with the head pain. The pain was excruciating, like my head was going to explode, but it wouldn't last more than a few minutes, so I never sought out a doctor for it. Part of my reluctance was that a doctor would tell me that something serious was going on. My younger brother was diagnosed with epilepsy when he was ten years old, so my fear was that the pain in my head could be somehow related to his condition.

A few years ago, friends and family members, as well as myself, started to notice that my left eyelid drooped and twitched often. Along with that, my left arm and leg were very weak. I couldn't trust myself to carry something with that arm, and worried that my leg would give out. In the past, I have never had any medical problems. Rarely have I seen a doctor other than when having my children. I don't even wear glasses or contacts, but when I noticed my eyelid I decided to go to the eye doctor. My optometrist is very good, and his specialty is plastic surgery. When he saw me, the first thing he said was that something else must be going on, because I'm too young to have this problem. He said that he typically sees this in older people.

From there I went on to all kinds of tests; MRI, blood work (because they thought I might have Lyme disease or Lupus). All the tests came back negative. I saw a neurologist who ran some tests, which also came back negative.

Around this time I started to notice an indentation or "hallowing out" on the left side of my face, above my eye. The skin on that spot is darker, and a friend said that it looked like I had a bruise. I have been wearing my hair longer on that side to cover my face, and when I pulled my hair back to show the doctor, he didn't say anything. At my next appointment with him, he told me that he had consulted with other doctors, and they thought that I might have Parry Romberg. He referred me to a neurologist who had worked at Penn State and had seen cases of PRS. My optometrist had only seen two cases in the years he's practiced. The neurologist confirmed what he had suspected, but told me that if I were younger he would be worried about the atrophy in my face. He couldn't tell me much more, because as you all know, they don't have many answers.

I went on to have two eye surgeries to lift the lid and hopefully decrease the drooping. The first didn't seem to make a difference, so six months later I had the second surgery. Between both surgeries, he has cut an inch of muscle out of my eyelid. The second surgery was an improvement, but he told me that I don't have the strength in that muscle, so it would be hard for him to say how long it may last. I had to use eye drops for a while after each surgery, and at times I would have blurred or double vision.

It has been about a year since my last surgery, and my eyelid is back to drooping. I have an appointment to see the optometrist again in the beginning of April. I'm so afraid that my eyelid won't be able to stay open no matter how many surgeries I may have. One of my purposes in writing this is the hope that maybe someone reading this had the same eyelid problem, and could offer some support. I have tried looking for a support group in my state, but had no luck. I can hide the left side of my face with my hair, but my eyelid really upsets me. Because of it, I don't like to look people in the face anymore when talking to them.

I hope this is not too long of a story. I tend to write like I talk; too much! If anyone has any suggestions, has had experiences similar to mine, or has any information on a support group in Connecticut, I would really love to hear from you!