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Liquid silicone can be removed and I am proof.
Here is my PRS story.

Written June 2008

I am 56 years old.

When I was probably 7 years old my mother noticed two "white" spots, one on my upper lip and one under my right eye and that I no longer had any bottom eyelashes on that eye. Being a nurse she began taking me to see a lot of different doctors the only one I remember was one named Slaughter. She even took me to New Orleans to Oshners and I took oral steroids for many years and finely had a bad reaction to cortisone after taking it for at least two years.

I was finally diagnosed as having PRS when I was 10 or 12 years old. The diagnosis was made by a plastic surgeon (now retired) here in Mobile, Alabama where I still live. I was very fortunate in that Dr. Green had paid attention in medical school or during his residency when they covered PRS and he was told that what we have is very rare, and that they may only encounter one person with PRS during their entire career. I still remember him telling my Mother and I the medical name for what I had, that it was not contagious, not hereditary, and not curable. He also said that I needed to wait until I was at least 14 and finished growing and my body finished maturing before any reconstructive surgery could be done.

When I turned 14, I went back to see Dr. Green and he recommended I have a new procedure, called liquid silicone injections. He told us that Dow Corning was conducting the study on medical grade liquid silicone. He was still friends with one of the doctors who was a member on the test panel that was authorized to use the medical grade silicone.

Dr. Green called his friend, Dr. Dicran Goulian, and told him that I had PRS and set up the initial meeting. My Mother and I traveled to New York City and met Dr. Goulian. I liked him and my Mother felt that the injections would be my best bet. Since I was part of a test program, there were no doctor fees involved. The major expense was flying to and from New York. I remember that his office address was 116 East 68th Street and that his nurse's name was Joyce and that she always let me hold her hand while he was doing the injections. He could not give me anything to deaden the injection site because it might cause swelling so poor Joyce's hands really took a terrible squeezing. The liquid silicone burned going in and it seemed that it took forever. My Mother went with me probably twice, my Daddy with me once (I was told by my Mother not to let my Daddy watch me get the injections because being his favorite child he would not stand for me to experience such pain and I would have to stop and we were already beginning to see very favorable results). I think Daddy knew it was something he didn't want to or shouldn't watch so he waited for me in the reception room and afterwards he and I went to Connellsville, PA for his High School reunion and to see his sister. I was born in Connellsville and was stunned by how small it was.

My older sister went with me once and she should have stayed in the reception room because she fainted right away, I was very embarrassed.

Eventually Dr. Goulian was made Head of Plastic & Reconstructive Surgery for Cornell University Hospital and I began making the trip to New York by myself. Joyce was no longer his nurse and the office, although big, not as plush and fancy as the one in my first visits. My initial results with the liquid silicone injections were great. I got through high school and Auburn University with a fun and active social life. I continued to see Dr. Goulian until I was about 25.

When I about 27 the silicone began to get very hard and moved up and over into my right eyelid. My other older sister had married a doctor who was very interested in my PRS and knew that I needed to have something done about the silicone and searched out doctors who knew about PRS.

I was working in Jackson, Mississippi at the time and I remember the first doctor he suggested that I see was at the University of Virginia. I won't type his name. I will just say I didn't like him.

The next doctor he suggested was Dr. Maurice Jurkiewicz, who was practicing at Crawford Long Hospital, part of Emory in Atlanta.

I liked him instantly! He said he felt that I had been over injected and that my body was trying to now reject the silicone. He said he would confer with his colleagues and get back to me with a game plan on how to best fix a progressively bad situation. The initial plan was to do a fat graft from my abdomen after removing most of the right side of my face because he didn't think the silicone could be removed. I remember being stunned by the number of people in the operating room and was reminded that Emory was a teaching hospital.

Well, what was scheduled to be a 10-12 hour surgery only lasted about an hour. The reason being, Dr J found he could separate my skin from the silicone and that they would be able to remove most if it, which is what they did in my second surgery and did an omental graft from inside my stomach to fill in the void.

Needless to say I had to have many revision surgeries and I have the scars to prove it. My last surgery was in 1996 and I had my eye lids done. Dr. J was no longer doing surgery so I had it done by a doctor he suggested. That crazy fool only wanted to do my right eye!

I told him since the insurance industry now termed any PRS surgery as cosmetic he may as well draw on my left lid cause he would be doing them both because I was having to pay the bill.

I am done with surgery--too old. I do see a neurologist because I had a seizure in 1984, most likely a side affect of the PRS or possibly all the surgeries.

I guess my point is, being able to remove silicone depends on each individual case and the capabilities of the surgeons. I was very lucky I had a lot of good people watching out for me, taking care of me and performing my surgeries.

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

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