Being born with Craniosynotosis

[Zachary]

When I was 2 years old, I had a surgery for Craniosynotosis! Well, it worked, but after only a few years the skull still continued to deform... I am now too afraid of surgery (( being aware of the world and all )) So now I live with it, constantly experiencing the bad and good things about it. For one, I am unique. This is my gift. Sadly, some people in the world can not understand difference. But, I am going to live life to its fullest, Cranio will not slow me down, I will help people and do great things

[Jennifer]

If you don't mind my asking--- beside being unique (which everyone should be!!!!) What effects has cranio had on you? My daughters just 2- so I can't yet ask her these things!

[Zachary]

Mostly just the feeling of being different, unlike the normal everyday person...

And in some way, I think this has helped me expand my learning, because I love to think! At times I wonder what would things of been like if I didn't go through the surgery, could I of been different? Perhap the craniosynotosis isnt such a bad thing, who knows, maybe it effects certain parts of the brain that can enhance certain abilities :) Like, I am good at science, history, arts, theatre, orchestra... yet I stink at grammar :( Just doesn't click.

Differences effect us in many ways, some may see them as bad things... but I feel that this makes me who I am

[Katie]

I think you are a very wise and intelligent you g man Zach! I'm glad you found us. We have a nother member named catzeyes (http://www.craniokids.org/support/member.php?u=75) who is a teen with cranio also. She has not been on in a long time, but you may be able to contact her through her web page, or the email link in her member profile.

[Zachary]

Will do :)

[vancesmommy]

I agree with Katie, you are very wise and intelligent young man!! I often worry about how my son is going to handle his differences when he is your age, and I can only hope he feels like you. What type of cranio did you have. Oh, and I must say you are very handsome! I wouldn't have thought you had cranio by seeing your pic.

[MikenAustinsMommy]

I was going to say the same thing Denise. You are very handsome Zachary and being a "head picker" I can't tell from your picture that you had cranio.

[Zachary]

Not quite sure what type cranio I have... I have another pic on my profile, mostly my hair covers up my creases and bumps

Here is the pic:

http://i9.photobucket.com/albums/a71/ZDragonz/IMG_1553.jpg

Note the eye cheekbone, asymetric eyes, mouth, and ears. Dent between the eyebrows and on the left temple. A crease running diagnolly from the top of the forehead to the right forehead

[Zachary]

Ok, talked with mom and learned a lot of things! I have Corronal Cranio on both sides of the head, left side was fixed (( right for you )). So, she told me about Dr. Fearon and how he was the doctor we saw, and I learned sme interesting facts about him. Such as, he was the first to use the zig-zag technique for making the cut along the head, also he didnt shave the head like other doctors :) So your looking at one of his first few patients who have the zig-zag across the head!

[Jennifer]

Wow! I've heard of him and I'm now where near Texas! I believe you were in good hands! There are a few parents w/ bi-coronal kids on the board. Does your mom recall why they corrected just the one side? How very interesting!

[Zachary]

Only one side showed signs of cranio, the other did not show up until 1 year later

[mikaylasmommy]

Hi Zach. I am one of the bicoronal moms. My daughters surgeon says maybe when she hits a growth spurt during puberty she may need another surgery. Do you know if this was when your assemetry appeared?

[Zachary]

yes, around that time :)

[Matthews Mommy]

Wow Dr. Fearon is a wonderful doctor, I wanted to use him but I could not afford the travel or the bill the insurance would not let us go out of network.

[Zachary]

What can I expect to go through? Like, what procedures?

[bloom_ss]

Hi, I just wanted to say that I hope my daughter has your attitude about life when she grows up. She is only four months old right now though and just had surgery a month ago. You sound like a very positive person (I would say young man, but that makes me sound old...LOL). Anyway, I just wanted to say that I admire your positive view of life. =)

~Stephanie

[SunnieFaerie]

When I was 2 years old, I had a surgery for Craniosynotosis! Well, it worked, but after only a few years the skull still continued to deform... I am now too afraid of surgery (( being aware of the world and all )) So now I live with it, constantly experiencing the bad and good things about it. For one, I am unique. This is my gift. Sadly, some people in the world can not understand difference. But, I am going to live life to its fullest, Cranio will not slow me down, I will help people and do great things

Good for you, Zachary! I never knew about craniosynostosis until I had my last born. But I've never cared what others thought of me. I am me. Like me or not. It's good to know there are others that could care less what people think.

You ARE unique. I hope one thing I can teach my children is that we're all different and to consider that normal. So far in 11 + years of being a mom, none of my children have ever commented on other people's differences. They just seem to accept it and still be friendly.

[mommy4.0]

HI Zachary. I think you're an amazing guy, and I have to say very good looking too!
My son Landen had surgery for his sagittal cynostosis last month and his doctor used the zig zag incision and didn't shave his hair either. His stitches just fell out this weekend.
I'm so glad you're here with us.

[denise rast]

Zachary,
It's awesome to find a teen on this web site, i just joined a few days ago, my daughter has single suture Coronal and we are just seeing the Neurosurgeon tomorrow. She's 2 months old and I have really been scared about the whole thing. You are very good looking and all those amazing things you do. You should look into CCA Children's Craniofacial Association. They'd love to have you as a Volunteer you can teach others about the condition and reach a lot of kids that can look up to you for support!!!
Denise

[Tamz]

Zach I have to agree.. you have a great attitude and you are a very intelligent and handsome young man. I hope all goes well and you keep teaching others about difference. Luv Tamzie

[Jenny]

Zachary, its so great to meet you!! I am 27 years old, and also bi-coronal. I have 2 daughters, one of them is also bi-coronal. I don't know if I really liked being "unique" but I can't complain. I've never been teased about it. I don't think people ever noticed, except if they saw where my hair was thin from the scar. The worst was getting haircuts! I had two recon surgeries. The second because the first didn't heal correctly, so they took a bone graft from my hip and placed it into my forehead. I've got a really lumpy forehead, with two open holes that pulse when i'm mad, lol. These both were done before I was two, and I have a straight line scar. My eyes area bit different too.
My daughter had a complete cvr with zig zag suture. She will be needing a second surgery though, since her temples sunk in.

[jreidmomof2]

Zachary it is great to meet you. I have a nine year old daughter with craniosynostosis too. Hers was the right front. she had her surgery at 6 months old. My question i guess is that i noticed you say grammer is hard for you. Do you have IEP meetings in school? What do you do to help you with the grammar part of school? She is in third grade now and has trouble with grammar. She ace's everything else but cannot get the grammer. I only hope my daughter is brave like you when she grows up. She is very outgoing and wonderful. But the reality is she is beginning to realize she is different in school with reading and spelling. Thank you for your time.