Medical Mysteries

[mikes mom]

I got a call from ABC News in New York a couple of nites ago. A producer from "Medical Mysteries" said they are considering doing a show on Moebius and wanted Mike to participate. I've never seen the show. Has anyone else seen it? I like spreading the word about Moebius, but I don't want to participate if the show is sensationalistic. Anyone familiar with it?

[Mawrtyr05]

I saw it in passing over the summer (no time for tv now...) and don't recall it being too sensationalistic. Maybe it can counter some of the incorrect info on the Discovery Channel show segment! ;)

[Sean]

If ABC News called me & told me they wanted to do a new segment on my son, I would immediately accept...if Maury Povich called me & wanted to do a segment on me I'd decline. ABC News Primetime is not sensationalism. It's serious news. Jerry Springer, Maury Povich, Entertainment Tonight, tabloid shows, those are the programs to watch out for.

But why did they choose Mike? I'm sure he'll do good, but why not someone...bigger...like The Abbots, or Vicki McCarrell & her kid?

[mikes mom]

They wanted someone who has done smile surgery, which Mike did years ago.

[Sean]

so any update? its December already. Did your t.v. star get filmed? :)

[xxx Kac]

yeah that is harsh!! I dont know how i would feel, i would feel imbarresed and ashamed to some degree, but then again if i was helping i might do it..

[Grandma F]

Mikes Mom,
You said your son had the surgery. How did it go? Would you suggest it or not? How old is your son? The doctors told us when Joshua was about 1 that they could do a surgery but that sounded scary. His mom figured to wait until he was old enough to make his own decission. But I'm not sure if you get too old to have it done. I was watching a segment on our local news about a boy with Moebius in Missouri. He doesn't want the surgery because he figures he's perfect and just the way he's meant to be. I go back and forth. Is it vain to want something different for your kids? Or grandkids in my case.
We always want better for our offspring. But who's to say a smile is better than no smile?
Desicions, Desicions. Frustrating.

[mikes mom]

It has been 10 years since Mike had the smile surgery. He had the first side done the day after his 6th birthday.

We were in the same boat of deciding to get the surgery or not, or wait for him to be old enough to make the decision or not. We originally were introduced to the idea of surgery when Mike was three. An orthopedic surgeon was seeing Mike for hand issues, and had done work with Dr. Zuker. He suggested the surgery to us. At that time, we decided against the surgery. We talked to Mike's neurologist about it, and he was against it. He said that people who had the surgery had to bite down to cause a reaction that was supposed to be spontaneous. To us, Mike was perfect the way he was. We didn't need a smile to know he was happy. Besides, we had spent three years building a wonderful sense of self esteem and confidence in Mike.

We really didn't revisit the issue for another couple of years. We talked to an adult with Moebius who had smile surgery. Hers was a facial sling, and not nearly as successful as the transplantation that Dr. Zucker was doing. She was thrilled that she had the surgery done. She said that even if it didn't look like a smile to others, it made HER FEEL AS IF SHE WERE SMILING. She only wished the surgery had been available to her when she was much younger. So, this started us thinking again.

We spent alot of time thinking and talking about the surgery. It is one of the hardest things I ever did as a parent. Putting your child through two lengthy surgeries that are elective is no easy choice. Our main concern in thinking about the surgery was how much would it benefit Mike? Would it make his life easier? As I said before, we were way past the point of needing to see a smile.

Although Mike was too young to be left in charge of the decision, his imput was very important. Our explanation to him was that we loved him just the way he was. However, if he were in a situation where people (including other kids) didn't know him, they might be hesitant to approach him because without smiling he didn't seem as friendly. (Mike was not a socially aggressive child, and would not approach other people. He would let them take the first step.) We talked about how the smile surgery would make it easier to get to know him. He told us of his decision " Well, I thought about it, and I'm a really good kid. It would be unfair to other people if they didn't get to know me, so I want to have the surgery. Plus, I want to be able to smile on the outside".

Mike had the first surgery in Sept. When he went to school, we talked to all the kids about how important it was to be careful for a couple of weeks not to bump Mike or his face. We also asked them for their help with a very important job. We wanted them all to watch for the beginnings of Mike's smile. ( it takes about six weeks). When the movement started, the kids were jumping out of their skin. He was the celebrity of the hour. I got phone calls from the other parents, saying that had heard from their children, and everyone was so excited. Even the bus driver was in on the lookout mission!!!

That year when we took Mike for his neurological check up, we suprised the neurologist with a smile. This is the doctor who strongly advised against the smile. He took one look at Mike's new smile and said "I was wrong". He then "borrowed" Mike to take him all around the hospital and show him and his smile off!!!

In the years since the surgery, I have asked Mike if he is happy he had it, and would he advise others to have the surgery. His response has always been a yes.

I know others who have decided against the surgery and are happy with that decision as well. Some like to wait for the kids are old enough to make the decision. That is fine as well, although with some kids, if they are made fun of when they are young, they never fully recover. Don't you wish you could coat them in teflon so that everything slides right off? When they are little, and so much of their happiness depends on you, you want to make all the right decisions. For Mike, the smile surgery was the right choice.

[Grandma F]

Mike's Mom,
Thank you soooooooooo much for the response. I'm printing all of this out for Joshua's mom who doesn't have access to a computer. I hope it will help her with any decisions she may need to make in the near future.
I've gotten so emotional in my old age. And since they lived with us the first 4 years of his young life I sometimes feel like he's my son and not my grandson. I teared up reading your response.
Again, Thank you very, very much.

[babyboomer]

There are those who are absolutely pro-surgery and others who are just as absolutely anti-surgery. And both sides have their own convincing set of arguements. So make a list of the two "sides", pick out the ones you/your family consider relevant ... and go from there. I have yet to hear from anyone who's had "smile surgery" that s/he 'regretted' having it done ... and I don't think there are all that many "converters" (anti-surgery to pro-surgery).

I am curious though .... does anyone think that the smile surgery results have improved over time (1995 - 2008). Are there significant changes in the manner in which they are done? Is Dr. Zuker still the "gold standard" or are there other people/places that do "gold standard" work? And - for anyone on a governmental type of health plan - do they (Medicaid, Medicare, medi...?) pay for smile surgeries? How much do they cost? Am curious what post-op experiences have occurred to reinforce the decision to have smile surgery? Who (parents? the kid?) should make the decision? How do parents present the option to their child? pro-surgery? or neutral? Have there been any 'studies' after smile surgery to gauge how people feel 1 year, 5 years, 10 + years down the road?

[Sean]

Smile surgeries are for those who can't put up with society's ignorances.

[Meikster]

Well, I had smile surgery when I was about 7. But if I had been older, I probably would not have done it. I don't use my 'smile' a lot, in fact hardly at all. It just doesn't feel natural.

[mikes mom]

Sean,

I would assume you didn't mean it that way, but your comment is a bit judgemental!!

[Sean]

People feel more comfortable emotionally after a smile surgery. They all do. They do wanna smile, and speak a lil more clearer, thats beautiful. But aside from that, deep down, they just wanna be accepted as a more normal person because they don't think they can handle the hardships that comes with our disorder. It is very hard to be a Moebian minus all the miraculous surgeries they have today. But I wouldn't have one even if it was free.

Now I'm not saying anyone who had it is weak. I'm just saying they took...the easy route with dealing with Moebius. Anything I have faced, I've always figured away around it. Speech, physical ability to do things, etc, I've always figured out alternative ways of doing things.. The only thing "aide" Ive had in my life...2 aides actually...is speech therapy from preschool - senior year of high school, and arm prosthetics. I ditched the prosthetics at age 18, because they were a pain. But my speech went from lousy, to decent with all those years of speech therapy.

Before the age of 40, I am told I'll lose all my teeth. And I can't wear dentures cuz of the weird structure my mouth is in. Thats gunna be a biggy of a task to overcome, but if I overcame all those cruddy things in the past, I can overcome anything. Because you know why? I've accepted my birth defect. I live with the things God/my parents gave me. I make do with what I have. I'll make do with what I lose. It's like if a person gets lost in the forest, with only a back pack over his shoulder, which includes only 1 meal, and it took officials 3 days to find that person. That person will not call up Pizza Hut and order a pizza. They will make do with what they have on them. And doing that, strengthens the human spirit even more. I, myself, would rather have a very strong human spirit, then to take that road a few Moebians have taken.

[mikes mom]

Sean,

In spite of Moebius, I have always thought of Mike as a normal person.


Have you spoken to many people who have had the surgery? You say that deep down they just want to be accepted as "more normal" because they don't think they can handle the hardships that come with Moebius. I, on the other hand, having met multiple people who have had the surgery, do not know of a single one who feels that way. I'm just wondering how many of these people have expressed these feelings to you, or if you are just guessing.

[blueflower]

I did not have the surgery just yet. Yes, the option was presented to me by my parents when I was about 14, but I turned it down. I didn't feel that different and didn't think it would change too much in my life. At that time I didn't know anybody post surgery and the results, and the child with a swallen face that was waiting in the doc's office, surelly did scare me away a bit. During my blue periods I did regret it later on. But after getting more info and meeting others who had gone thru the surgery, I decided that it is not for me. Certainly it is a personal decision. Just like everything else is decided on case by case basis, nobody shouldn't be judging some else for going thru it. Some people are just lucky with how their lives turned out to be, doesn't mean the next person will have it same way. Also remember that while we are adults, the next generation of mobieans will have to face different obstacles in their live than what we had to endure - so think about that!

[Sean]

We have our own opinions. While we don't agree with some, our opinions are our opinions. So think on that!

[equilibrium2006]

We have our own opinions. While we don't agree with some, our opinions are our opinions. So think on that!

Actually I concur with Seans assessment, having the surgery for me was a huge hassle in highschool, my weight fluctuated wayyy to much and it interfered with sports, interfered with my confidence.. with everything and it hurt my body on the long run. The only "plus" to my surgery was I had a nice trip to Indianapolis.. thats all. I mean if you want to suffer through 16 hours of surgery for a smile that feels nice emotionally/mentally but awkard physically then more power to ya.

[kraymin]

I saw a story on Maury Povich years ago about a woman whose breast implants (silicone) leaked and she almost died. She developed a plethora of diseases. One disease was short term memory loss. She also has to soak in a tub before removing her panty hose due to the fact her skin is like mucus. Does anyone know the story or where I can read about it? Thanks.

[Feelrich]

I live with the things God/my parents gave me.

Sean, do you really feel that your parents or God gave you your birth defects?

I doubt any parent would choose their child to have any birth defect. I would bet that if they could have taken them away from you, they would have chosen to do so.

My daughter once blamed God her her issues. It wasn't easy for me to explain to her why I don't believe that to be a true statement. But a Christian adult with Moebius explained to her why God did not give her those differences, and she trusted and believed his explanations. Thankfully!

[equilibrium2006]

Sean, do you really feel that your parents or God gave you your birth defects?

I doubt any parent would choose their child to have any birth defect. I would bet that if they could have taken them away from you, they would have chosen to do so.

My daughter once blamed God her her issues. It wasn't easy for me to explain to her why I don't believe that to be a true statement. But a Christian adult with Moebius explained to her why God did not give her those differences, and she trusted and believed his explanations. Thankfully!


An ex-girlfriend once told me if God thought I wasn't strong enough to handle moebius syndrome, then he wouldn't have given it to me. I have enough faith in him to believe i am strong enough that he given this to me and well I am!

[Sean]

I don't blame God for anything. If I believed more in God, I'd probably would. :)

[xxx Kac]

Bleh, I never believed in God, and I never thought he was the source of my problem, for there are so many worse out there....but if I did believe in God, i would never like him, ... cant you just get by the day with out having to ask somebody to bring you a good day? like....ah... HA ok, thats cool, w/e yah know, what ever floats your boat...but then everyone to their own, which is a good thing i suppose

[no offence to any christians]

[Sean]

Don't forget, God sends bad people to Hell..but...He loves everybody!



Ive yet to figure that out. :)

[xxx Kac]

or does he? or do we just like to think the bad people finally get punished for the bad things they do...wake up people, you dont know these things.

[Sean]

to have free thinking respectable Moebians in here that think for themselves. :)

[babyboomer]

between someone who chooses to have or not have something such as smile surgery (and acknowledges that others have differing opinions) and someone else who chooses to have (or not have) smile surgery and denigrates or belittles the choice of anyone who didn't do the same thing as s/he?
*grimace
"They're bitter... they cling to guns or religion"
:eek: