Had mine shortly after birth in NJ 1975. Sagital fontanel was fused, repaired w surgery. I have only a gnarly scar and possibly a bumpier head than average but no issues otherwise. No sinus issues, no headaches, no vision problems, and no malformed head issues (I may have a bigger forehead than average at least IMO). Apparently something was wrong w surgery stitching and thats why I have a bit of a major scar from the center of scalp to the back of skull. hardly can see it because its covered by hair.
Oh also was born w double hernia and that was fixed shortly after birth as well. I was pretty well cut up and operated on before I even knew what hit me =D .
My Parents claim that since I was not anesthetized for either operation since i was only weeks old (or younger>?) that I have some sort of issues w pain management and its likely why I am irritated easily or find little comfort in things most people do.

Hello. It doesn't seem like this post is active anymore, but I figured I'd still contribute for those who might see it in the future. I was born in 1994 and had my craniosynostosis repaired when I was 2 years old (1996). My operation was done in Florida. Before my surgery I had obvious asymmetry, but that quickly went away soon after my surgery. In my early teenage years we started to notice that my nose was crooked and my forehead wasn't completely smooth. My scar was also very prominent and I still had a soft spot on the center of my head. When I was 16 I underwent surgery to fix my nose, forehead, revise my scar, and fill in my soft spot. My scar is no longer a zig-zag scar, but more of an S shaped, its not as visible now. Two years later I had a second rhinoplasty because one side of my nostrils caved in. Currently, I am 22 and looking to have a third operation. My septum is severely deviated, and I get frequent headaches and earaches. I also have difficulty breathing. I am also looking to get one of my eyebrows lifted because, as I've gotten older, it has begun to droop, making it very uncomfortable and obstructing my vision.
So, if there's anyone out there who has any recommendations for surgeons in Florida who have experience working on adults post-craniosynostosis correction, let me know!
Also, reading through many of these posts it appears as though many people don't realize that your health insurance should cover any operations for correcting abnormalities due to a congenial birth defect (craniosynostosis). Insurance has covered ALL of my surgeries!

Hello. It doesn't seem like this post is active anymore, but I figured I'd still contribute for those who might see it in the future. I was born in 1994 and had my craniosynostosis repaired when I was 2 years old (1996). My operation was done in Florida. Before my surgery I had obvious asymmetry, but that quickly went away soon after my surgery. In my early teenage years we started to notice that my nose was crooked and my forehead wasn't completely smooth. My scar was also very prominent and I still had a soft spot on the center of my head. When I was 16 I underwent surgery to fix my nose, forehead, revise my scar, and fill in my soft spot. My scar is no longer a zig-zag scar, but more of an S shaped, its not as visible now. Two years later I had a second rhinoplasty because one side of my nostrils caved in. Currently, I am 22 and looking to have a third operation. My septum is severely deviated, and I get frequent headaches and earaches. I also have difficulty breathing. I am also looking to get one of my eyebrows lifted because, as I've gotten older, it has begun to droop, making it very uncomfortable and obstructing my vision.
So, if there's anyone out there who has any recommendations for surgeons in Florida who have experience working on adults post-craniosynostosis correction, let me know!
Also, reading through many of these posts it appears as though many people don't realize that your health insurance should cover any operations for correcting abnormalities due to a congenial birth defect (craniosynostosis). Insurance has covered ALL of my surgeries!

My op was in 2002, I’m 17 now. I’ve never met another person who has this but I think if I did I’d break down in tears cause just reading these comments alone is making me well up.