Marilyn's Story

I am 59 years old, and I am married and have two children. I was diagnosed with Rombergs at the age of 16 in 1963.

The subtle changes to the right side of my face started around age 9. The first thing we noticed was a slight darkening of the skin on the right side of my face, down my neck and also on my side above my waist. There continued to be changes in my face. The fatty tissue was simply atrophying away. My nose was shifting toward the atrophied side and my eye was sinking. I also started having muscle spasms in my right jaw that could be quite severe at times.

In 1963, our family doctor sent us to a plastic surgeon in Omaha, NE. He diagnosed it as "facial hemi-atrophy". There was a surgery at that time, but it was not proven to work. I was told to get more rest for the jaw spasms and sent home. My Mother says I was shown pictures of people with this disorder. But I honestly do not remember that. Maybe, I didn't want to remember it. I was basically sent home to live with it.

I finished high school and the atrophy kept going. I was married and had my first child at the age of 20, and my second child two years later. Probably between the ages of 25 to 29, my atrophy became about as bad as it would be. My forehead and temple area had bone deterioration as well as tissue loss. The fatty tissue in my cheek and down into my chin completely disappeared. That side of my face was like skin pulled over a skeleton. My right eye is quite recessed. My eye lids do not close completely. My vision is pretty good and I have to use a lubricating eye drop many times during the day and night, to prevent dryness. I have the "en coup de sabre" line down my entire face. I also have tissue loss in my side above my waist.

The condition of my face was rarely talked about. But for me it was always there. I raised my children and I took part in their activities. I was never a very social person and I never went out of the house without first thinking about how I looked. There were stares and second looks that can really ruin a good day.

Over the years, I have seen many doctors and dentists who did not know what was wrong with me and showed very little sympathy. I had one doctor tell me jokingly that he could put me on a diet, so the good side of my face would lose and be the same as the atrophied side.

In 1980, I saw a show on Phil Donahue concerning facial differences. Some of their stories could have been mine. I just wanted to be able to blend into a crowd, not part the crowd when I walked into a room. That year, I saw another plastic surgeon to see if anything could be done to help me. At that time, collagen injections were just coming into use. At first the doctor thought those injections could be helpful. But later said my atrophy was too severe and that nothing could be done for me.

I went many years later until 1994, when we changed family doctors. This new doctor did not know what was wrong with me, but she referred me to Dr. Bite, head of Reconstructive Surgery, at the Mayo Clinic in Rochester, MN. I was so relieved when he said that he had seen many people with Rombergs Syndrome, and had performed surgery on them and he felt that he could help me. At long last, there seemed to be answers for me to have some relief from this problem. It wasn't until I saw Dr. Bite that I even learned the proper name of "Parry Romberg Syndrome".

The next problem was trying to get our insurance company to cover such a surgery. We started the long process to try to get coverage. It started out with letters from my family doctor, and letters from the Mayo Clinic doctors. Then the denials started coming in. Our insurance company considers this to be cosmetic surgery because I did not have a "functional defect". We went through many months of phone calls and letters, of being hopeful and getting those hopes dashed. The strain was almost too much. I had waited 30 years to have someone say they could help me and now I was being denied the chance to get that help.

Dr. Bite wrote that cosmetic surgery involves improving a normal structure and that my face was certainly not normal. Therefore, it should be considered reconstructive to restore normal structure. The insurance company still would not give coverage. We again appealed their decision. I appeared before a grievance committee. I will never forget that meeting. My husband and I sat at the end of a long table with 4 or 5 people along each side. I read a statement and bared my soul to them. They asked a few questions concerning the surgery. There was even a doctor present, but I felt that he did not have the slightest idea what Romberg Syndrome is. And if he didn't know about it, the other people certainly didn't either. Again, I was denied coverage. How could they sit there and see how I looked and how it affected my life and still not help me?

My husband and I made the decision to go ahead with the surgery without the support from our insurance company. It was not right for them to deny me coverage. But on the other hand, it was not right for me to not get the help that I needed so badly.

In July of 1995, I had reconstruction of my forehead and temple. I have two artificial implants, a steel plate and screws holding it all together. The second surgery was in October of 1995. I had a "free flap tissue transfer" using tissue from my upper thigh to transfer to my right cheek and chin area. This also included micro vascular surgery to establish a blood supply to keep the transferred tissue alive for a long term result. This was quite a lengthy operation. I was under anesthetic for close to ten hours and in the hospital for a week afterward. The operation was a success. But too much tissue was put in and I went the next year with a very fat cheek. That was a difficult year for me. It was like trading one facial difference, for another. My surgeon feels it takes this long for the swelling to completely subside and for the transferred tissue to stabilize.

In September of 1996, I had liposuction to remove some of the tissue in my cheek, and also liposuction of my abdomen to harvest more tissue, to fill in around my nose and chin. There was improvement, but I still had a little too much tissue. In September of 1997, I had more liposuction in my cheek and some of that tissue was re-inserted into my chin. I did not have surgery to correct my recessed eye. I was told there was a risk of double vision and even blindness if they tried to move my eye foreword. I have fairly good vision in that eye, and did not want to take that risk. Although my face will never be symmetrical, I have had good results. I still get a few of those stares and second looks that we come to know so well. I am grateful for having had my surgeries. My life is easier now.

This has been a very long and stressful process for me. Rombergs is a very cruel affliction. A person's face does not tell his personality or anything about his life. But unfortunately the face is all that some people see, when they look at someone with Rombergs. There is no comparison as to the quality of my life now. I still look different than other people. I will always look different. I know that I will always have the emotional scars from having a facial difference all those years. It is not something that goes away. I am a much stronger person than I ever thought I could be. I hope that I am a better person for having gone through it. Having surgery may not be the answer for everyone with Rombergs Syndrome. It affects us all so differently. For me, it was the right choice.

I am so thankful to have found the Romberg's Connection Support Group and my friends in the NORD (National Organization of Rare Disorders) Network. I have went a very long time thinking I was alone in trying to cope with having Rombergs Syndrome. Now I have a whole group of people to share my experiences with. It is good to not feel alone.

Feel free to leave a message for Marilyn at rombergs@hotmail.com