Reconstructive Surgery

Disclaimer

You MUST always discuss the risks of any reconstructive surgery with your surgeon doing the reconstructive surgery on you and/or your family member.

I have been thru many reconstructive surgeries over the years. I don't like to call myself an expert because I am not. But I've seen and experienced many things that many others have not.

Parents

I have met many parents of children with craniofacial anomalies thru the years. I am amazed at how much or how little they know about reconstructive surgeries. I think that it is great that there is so much information out there for parents. There was next to nothing when I was born.

When it comes to risks, I believe that parents know very little or information that is incorrect. Parents don't ask their healthcare providers enough questions about risks. I know the risks when it comes to having surgery. I know someone who has gotten the wrong blood during surgery and nearly died from it. I know three people who have died from complications from surgery. I take a risk every time I have surgery just like anyone else.

I think that parents are not fully prepared when it comes to seeing a child after surgery. But then again, what really prepares anyone for the sight of child whose features have changed so radically? My dad has told me how he nearly passed out after seeing me in ICU after my October 1978 surgery. My mom told me that she didn't recognize anything but my fingernails and eyes after that surgery.

I believe that some parents do not have realistic expectations of their children's surgical treatment. Some are very dramatic about their children going thru surgery. My parents were very realistic about their expectations. And I have never seen them get upset outwardly. I know they were nervous though like me.

I bet not many parents have seen the anguish of another's parent's face when something has gone wrong. Until she passed away, my mom can still recall the look on the stepdad of a child whose surgery had gone terribly wrong. That happened in October 1981.

Children, Teenagers, and Adults

I think that children whose parents cope better with the child's craniofacial anomaly and the subsequent reconstructive surgeries do better with the surgeries.

All children are nervous about having surgery. I get rather tired of hearing or reading about adults who share how horrible their experiences were. For many of those adults who go thru such horrible experiences, many opt to go thru more surgery. For one thing, things are so much different today then they were thirty-five years ago. Nowadays, hospitals do a lot to prepare children for surgeries, such as offering pre-op parties and tours of the hospitals. Before the 1970s, hospitals did not do that.

I think many teens and adults go into surgery with the idea that they are going to come out looking so much different. I think that many of them think that they are going to look like Miss America of Mr. America afterwards. Well it is not going to happen. Then they are disappointed afterwards because they had too high expectations. The more surgery one has on a particular area, such as the upper lip, the more scar tissue there will be.

I have not been too disappointed over surgery results. The only times I have been upset are when complications happened, such as when my columella pulled away twice in the 1980s. It was more frustrating than anything.

I notice that many adults want surgery as they get into their twenties, thirties, and later. For me, I am just ending my surgery road and have NO desire to have any more surgery. The only way, I would have anymore would be if I had a problem with a wire trying to work its way out.

Procedures

Not all procedures work all the time.

Cleft Palate Repair

In cleft palate repair surgery, there is a risk of a fistula forming in the palate after surgery. I think that it is a greater risk than everyone thinks. It is a known fact that some children will develop a fistula after surgery, even with all the care that is taken.
When bone grafting is done to the avoelar ridge (gumline), the graft does not always take. It might not take because cadaver bone is used (has a high risk of rejection by body), the age of the person, disobeying postop orders, or reabsorption of the bone by the body for some unknown reason.

Skull Reconstruction Surgery

In skull reconstructive surgery, there are many risks. There is the risk of brain damage (small but possible risk), infection (true with any surgery), and man-made bone or cadaver bone not taking (rejecting). There are two procedures widely used: traditional skull surgery (making an incision across the top of the head from ear to ear and peeling the skin back) and the endoscopic surgery (the use of endoscopy). Traditional is more widely used. Endoscopoc is really limited due to age of child (must be six months or younger).

Midface/Jaw Advancement Surgery

I think that going thru midface/jaw advancement is a once-in-a-lifetime experience. I had mine done when I was fourteen years old. And at age twenty, I was told that I needed done again. Both my parents and I agreed that I was not going thru it again. It had been too hard on all of us the first time. I knew someone who went thru it two times. The second time, her jaws were wired much longer than the first time. To this day, my bite is off one-half inch. It was an elective surgery the second time around for me and I chose not to do it again.

Distraction is used to bring the midface and jaw out without having to use bone grafts. During the procedure, the bones near the ear are broken. Then pins are inserted. For several weeks after the surgery, the pins are turned each day until the desired gap in the bones is reached. Eventually, new bone will grow. After the pins are turned, the device is left in place for several more weeks.

I think distraction used in craniofacial reconstruction is not a good idea. For one thing, the device that people who have it done must wear. Some devices look like a halo. I would not be a good candidate because I like to sleep on my side. Plus, great care must be done everyday to clean the pins that are attached to the device thru the skin. Distraction is not for everyone.

Some craniofacial surgeons still do the traditional jaw advancement, which involves bone grafting. Some surgeons do not wire the jaw shut even though they use bone grafting.

There are pros and cons to all three procedures, just like any surgery.

Anesthesia

I think that very few people think about the risks of going under general anesthesia even in the twenty-first century. I know that I will come out alive but I never know what is going to happen from the time I am put out until I wake up after surgery. Anything can happen.

Pictures

I think it is great for people to share before and after surgery pictures. That's why I have my pictures on the web.

Today's parents have advantages that my parents never had: The ability to see before and after pictures.

However, I don't agree with sharing pictures of children in the first day or two days recovering from surgery. I would not feel comfortable showing a child of mine pictures of a child in ICU with tubes. Besides, how many young children are allowed into ICU? You will never see any pictures of me within the first few days after surgery. You will only read my words about the experiences.

I am not against reconstructive surgery at all. I just think people need to look at each procedure very carefully. I just believe that people should not take any reconstructive surgery lightly.