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August 21, 2012

My name is Annette, I'm 46 and this is my Parry Romberg story.

The first time my Parry Romberg was noticed, I was 8 years old. I, my brothers and some of our friends were sitting around the table playing board games. They started teasing me about my "crooked chin". Like all kids, we joked around about it. But as most people know, back in the '70s your folks didn't run you to the doctor for every bump and bruise. So it was basically ignored.

I didn't have a lot of the side effects most people with Rombergs have, so ignoring it was easy. Well until I got to be 16 and I started wearing make-up and looking into a mirror every day. Then it was obvious, there was something wrong. But again as it wasn't "paining me", as my parents said. So it was pushed aside and ignored once again.

I really didn't let it affect me or my life overly much back then. It wasn't something that was poked and prodded into the foreground of my life, so taking a page out of my parent's book; I continued to ignore it and went on with my life as if nothing was wrong.

It wasn't until 1985, that my life started taking drastic changes. I met and married Don and together we had two sons, Michael in 1985 and Gary in 1987. Although neither pregnancy had any complications besides being delivered via C-section, the changes in my face were becoming more prominent with each passing year.

Although you could see the changes in my face, nothing was really done until May of 1998 when I went to see my primary doctor for a headache that I couldn't get rid of. Although Dr. Hanson didn't know what was wrong personally or just didn't tell me, he sent me to a maxillofacial surgeon, Dr. Sheldon Mintz.

Dr. Mintz was like a bull dozer! Whew! I remember walking toward the patient rooms and he stopped me on the way and said "you have Parry Rombergs". I was like excuse me? He said go in there I'll be right back... he came into the room with an arm full of books, with papers printed out and was like here see... when I think about it now, there wasn't a whole lot of information but there was enough to scare the crap out of me. I'm sure my heart skipped a beat when he said there was "No Cause and No Cure"... I was like excuse me?? I'm sure I shrilled NO CURE!? WHAT!? And promptly busted out crying like I was given a death sentence. Now, I knew for sure there wasn't going to be a pill or cream to make everything okay.

I'm not really sure how reconstructive surgery came into the conversation with Dr. Mintz... as I said he was like a bull dozer... one minute I was finding out what was wrong, the next he was taking pictures and scheduling tests to see if the progression had stopped. It was like a whirlwind for a couple months between pictures, tests and doctor appointments.

We finally settled on a date for surgery, November 4th, 1998. The objective would be to round out my chin, add to my cheek bone and fill in the cheek with a fat graft that was taken from my stomach. The surgery was for the most part an absolute success. Most of the work was done inside my mouth with the exception of a small incision on the side of my nose.

After everything healed, Dr. Mintz decided that he didn't hit the chin right and wanted to schedule another surgery. I wasn't in a hurry and waited until July of the following year. Surgery again went well for the most part. The recovery didn't. The liposuctioned fat he put into my lip and cheek became infected while I was on vacation in Ohio and had to be rushed to the hospital. His bedside manner frankly sucked and I refused to go back to him after I recovered from the infection. I guess my biggest thing with him was that I didn't get the concern that I thought my infection deserved. Sure this may have been a routine infection for him but not for me... "THIS IS MY FACE, NOT YOURS"... was the last thing I said to him as I walked out the door.

It took YEARS and a lot of changes to get up enough courage to ask my doctor to send me to another specialist. Dr. Wein said he doesn't play games and sent me to Dr. Stephen Buchman out at the Mott Children's Hospital. Dr. Buchman along with Dr. Richard Klein did my next surgery in 2003. The objective was to do a graft where they get the fat in layers so they can put it where they wanted. Surgery took 6 hours instead of the normal 2.5. Although there were no major complications during surgery, my home recovery was another story.

Five days after surgery, I called the office and reported my face was swollen, red and hot to the touch. I was told to come into the office where I was to see Dr. Klien because Dr. Buchman was out of town at a convention. He said he was going to draw out some fluid with a needle. It was going to be either clear which was good or colored which was bad.

Unfortunately, it was green and I was admitted to the hospital immediately. Dr. Klien came the following morning. The plan was to release a couple stiches and drain the fluid from my face with pressure, also known as pushing on it. Yeah... it was painful. They did this twice the first day. When they came in the following morning and saw it was same, they changed the plan and scheduled me for emergency surgery in hopes to save the graft.

I woke up with an antibiotic flow across my cheek and a drain tube on my jaw line which ran continuously. Dr. Buchman finally came back from the convention and after a review of what happened, made me stay at the hospital for 15 days total. The long and short of it is, the graft was saved. Although 8 years later, the graft is reabsorbing and I'm working up the courage for another surgery. The plan for the next surgery is supposed to be a bone graft and teeth implants... Oh I have the insurance and I'm sure that it will be covered, but I don't have the courage.

My family says I'm perfect the way I am and not to do it, but I want to... I would love to have a full face and smile once again.

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

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