Craniosynostosis is a medical condition in which some or all of the sutures in the skull of an infant close too early, causing problems with normal brain and skull growth. It can r...
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Craniosynostosis 32 years later
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I was wondering if any one else out there is post-craniosynostosis. I had my surgery in 1975.
Posted on 11/19/07, 07:11 am |
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Hi only just read your message I hope you get to see this. I am a member of a board called www.craniokids.org/support they have a few adults on there that have had surgery for craniosynostosis. I hope you can join us x 
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Mine was at Children's Hospital in Columbus, Ohio by a Dr. Sayers. Do you have any difficulties now?
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I don't seem to. I of course developed a lazy eye because of the eye sockets being out of alignment and my parents were supposed to have me undergo 3 procedures to repair. They only did 2, so my muscles are still a little weak, if I'm really tired I can feel my left eye vearing off a little. MY head and forhead are extremely lumpy. I have always wondered if there was supposed to be any upkeep with my skull, should I have checkups or anything. I haven't asked my mom, she absolutly HATES talking about it. While planning for my surgery, my parents agreeed that they wanted it to be bloodless - so it took about 5 hours longer than expected, and since my mother is an extremely nervous person as it is, I think this siutation traumatized her and she doesn't like when I ask questions about it.
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I have migraine issues and my eyesight is not the greatest. I too have the "lumpy" scull. I cannot go without a perm in my hair at all for two reasons, the bumps and my huge scar running from my forehead to the base of my neck (isn't pretty!) Whomever does my hair, I have to make sure that I tell them about my surgery because thet become extremely uncomfortable and don't want to ask about the scar.
My parents are the exact same way. Never brought it up and if I asked questions, they were avoided. I had yearly CAT scans until I was about 16 or 17, then just had one back in February because of my nasty headaches, but nothing showed up.
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