My story..I have Craniosynostosis and I'm an adult

[janda]

Welcome Brian. I am so sorry for everything you have gone through. It really breaks my heart when untreated adults share their perspective. I am really thankful for all of you coming on here though. I feel like you are speaking for our children since they don't have a say now and it really reinforces how important it is to treat cranio. I hope you can find some peace.

[Carmen77]

Welcome Brian... Thank you for posting on this site and reassuring us moms that we are doing the right thing for our kiddos!!!

I'm so sorry to hear all the frustruations and problems you have had to live with!! Just know that you are not alone, and that we are all here for you!!

Good Luck!! Keep us posted!

[tux1982]

Brian, I am in the same boat as you send me a private message when you get this

[powerstc]

Brian-
Thank you so much for your post and being so honest. I hope you realize what you have done by sharing this on this site. You have showed us parents who are on "the fence" about this surgery a different persepctive. I thank you for this but want to make sure you know that you ahve just impacted my decision and probably the decision of many others. You have helped to ensure my son will not have to go through the hardship of living with caranio. Maybe you can turn your inspriation and knowledge into a goal/aspiration. Thanks again for sharing.

[Jess33]

[momof2withcranio]

Welcome and I am so sorry that you have had such a rough time. This is a great support system for cranio parents and craniokids/ adults alike.

[Ryan S.]

Hey Brian. Shoot me an email sometime. I am a 27 year old who had cranio surgery back in 1983. Needless to say it was not as good as what they are able to do now but hey I am alive and thats all that matters. You are not alone my friend, trust me I have felt all the emotions that go with this. No two peoples stories are alike but I assure you we are not that different in many a way. Look forward to hearing from you.

[Hi!IamJay:)]

Brian if you ever want to chat with a fellow cranio adult hit me up! You're not alone, though you may feel like it sometimes. We all do!

[EP6532]

I grew up feeling alone... like an alien, family telling me they found me smashed under a rock living with lizards (they must have thought it was funny..) I had dreams and aspirations too but then grew into myself and found myself in dead end jobs mostly long days of outdoor or industry labor since they had the least amount of face to face interactions. We all feel alone but we dont have to be. I discovered the word "craniosynostosis" when I was about 21... I would google skinny head or long narrow face disorder just searching and searching for pictures of people who looked like me. then I found the site. Its nice knowing I am not alone. I even had "friends" mention my "alien" looking head and even my mother.. Its hard but they dont know what its like. I feel your pain. all of us here do! :)

[Tawnia]

Welcome to CK - hearing your story makes me all the more glad I opted for surgery. You are not alone though - there are quite a few cranio adults on this site both treated and untreated. You have come to the right place my friend! No one should feel alone.