I first noticed my face was becoming asymmetrical when I was 16 years of age. At the time I was working a civil service job at the Army Air Corp Repair Depot in Rome, New York. The year was 1944. The right side of my face was not quite as full as the left now. I went to a civilian doctor in the city of Rome to see about it. He had no idea what was happening. One thing he did do was to put a flashlight in my mouth to see if the cheek was thinner on the right as compared to the left. Nothing was solved or learned. A 16 year old, in 1944, did not question a learned man like a doctor. I do not remember when I first noticed the groove in my skull, but there is where I parted my hair. I did that even before I noticed the beginning of the atrophy. It runs from the center back of my head to the corner of the right temple.
At the end of 1944, I was now 17 years of age, I enlisted in the Navy. When I was going through my physical at boot camp, a doctor noted the asymmetrical face in my medical record. He had no comment on the condition and did not want the Navy held responsible when I left the service.
After Navy boot camp and in the Aviation Metalsmith School at the U S Navy Training Center, Norman Oklahoma, I twisted my ankle. The doctor in the training area dispensary noted the face and wanted me to go the the Navy Hospital at the training center " for observation". While there I was given a spinal tap with a pressure gauge attached to see if there was a difference in pressure when the right and left sides of my neck were pressed. I do not know the results of that. But, while I was there one of the doctors came up with a bright idea, paint my face with iodine and sprinkle corn starch on it, then pile on blankets to make me sweat. The corn starch would change color when the sweat came through the iodine. He wanted to see if there was a difference form one side to the other. I do not remember what the result of that test was. I had a few days of bad head aches from that spinal tap. Another idea was to see if I had an impacted wisdom tooth on the right side. There was one there , I do not know what the status of it was, but they carved away the jaw and pried it out. Then there were pictures to be taken, black and white and color (this was in 1945) The final experience was a command performance before the Chief of Medicine of the Hospital. He had studied in Europe and saw a case like mine, he wanted his young staff doctors to see me. He said that there were only three cases like mine that he knew of in Europe and this was a rare chance for his staff to see one. One of the features he pointed out was what he called 'The slash of the saber'. A line of demarcation between the atrophy and the normal areas of the forehead. It runs from a point above my right eye diagonally down across the eye to the edge of the nose, across the lips and ends in the center of my chin. Of coarse he used a French phrase and than translated for the young men on his staff.
Forward now to 1951. I was married and taking my physical for a job with New Jersey Bell Telephone Co. The doctor there had made this condition the subject for a paper while he was in medical school. He was the first to tell me something of the condition. ( In 1951 he was a white haired man. I assume he was in medical school sometime in the '20s.)
He said that if it was to start it would be at about 16 years of age and if it were to stop it would be at about 35 years of age, max. If not, then it would be with me for ever. He also said that there were about 60 cases on record in the U. S. Well, the 35th birthday came and went and I still had the condition.
Up to this period in time I did not experience any of the symptoms named in the Preliminary Draft from NORD that I read on the internet. The only symptom was the wasting away of the right side of my face. In about 1955 I experienced a tingling in the side of my face starting just over my right ear and traveling across my right cheek. It was about like when a person receives a needle from a dentist and the needle touches a nerve and there is a flash across the side of the jaw and tongue. I went to Dr. Fine in Perth Amboy, New Jersey. He had not seen anything like this before. From what I told him of my symptoms, he thought I had an inflamed nerve, and prescribed heat to the right rear of my head and one of the B vitamins to soothe the nerve. It worked. Through the years when the tingling happened I just did the same thing. I noticed that when I got that area of my head cold I had the problem. I was now more sensitive to the cold on that side and figured it must be the lack of fat for insulation. I became more careful about protecting that area from the cold.
As the atrophy advanced the soft tissue in the right eye socked went away and the eye sunk deeper into the socket. I never had an ophthalmologist confirm this, but I believe that as my eye receded into the socket the muscles controlling the eye became slack. My mind told the muscles to move the eyes but the right eye did not track as far as the left. All this happened slowly and I did not even think about it a lot, but it must be like a cross eyed person where the eye that has the best image of what you want to see is the one you select. It became more noticeable to me when I looked in the right outside rearview mirror.
In 1988 I went to a doctor to see if I was starting with Arthritis in my left hand. The doctor took one look at me and said '"I think I know why you are here". When I told him of my hand he was surprised. He knew of this condition and finally I had a name for it, Romberg's Syndrome. He said there was no way to bring back the lost tissue but he could stop any further loss. I was treated for the arthritis, but I did not like the way he 'displayed me'. On that first visit he asked if it would be all right if he had the two other doctors come in to see the condition, I agreed. But, he would make an appointment, then have a new assistant each time. When they were in the examining room he would ask if they noticed anything. Then he stood back with a silly look on his face while the novice stared at, me not knowing what they were suppose to be looking for. I did not go back after the second display like that. He said my case was the most advance he knew of, much better than the medical book he saw.
I did not have any changes of the hair, skin, seizures or unusual head aches. My eyes were about equal until about ten years ago, age 60 or so, when the right eye needed a stronger prescription Over the years I have had very few head aches, fewer than most people.
One thing I did notice was that as I held a cigarette in the right side of my mouth it seemed bigger than if I held it in the left side. It must have been the nerve ends were closer there than on the other. Another thing, without the skin being stretched over under laying tissue I did not have black heads or pimples on the affected side of the face. I guess that I had a very mild case except for the atrophy. The condition was mostly an annoyance 'til I was in my 50s, then it became quite pronounced.
It has continued 'til now, I am 71 years of age now. The area to the right of that demarcation line has wasted away quit a lot. It looks like the skull at the right temple is just covered with skin, something like the old war pictures of the concentration camp victims. Sorry if I have frightened anyone. Is there a relation between which hand a person uses ? Like a left handed person with the atrophy on the right side and does a right handed person have the atrophy on the left ????
Since then I have seen many doctors who have asked me of the condition, but none of them knew about it. Even when I gave them the name, they could not find it in their medical books. It wasn't in Merck's.
Now that I have found it on the internet and copied the NORD Disease Information sheet, I will have something to show them.
Our member, Martin passed away in October, 2006 at the age of 79 years.
