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

Hi msmbell, I also am post-crainosynostosis. My surgery was in 1978 in Boston, MA.

Mine was at Children's Hospital in Columbus, Ohio by a Dr. Sayers. Do you have any difficulties now?

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.

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.

I would love to hear your story....my daughter had surgery 19 months ago, I always wonder how the future will be.

my son just turned 7 he is very impulsive we are wondering if it could be a result of the pressure on his frontal lobe. He had his surgey 5 years ago we just dont no. he doesnt seem to be able to determine right or wrong and is in trouble a school alot HELP HELP

msmbell- Mine was in 1981 at Children's Hospital in Columbus, Ohio as well, but Dr. Edward Kosnik performed the my surgery. I was two months old.

I am a teenager who is "post-craniosynostosis". I had my surgery in 1994.

I'm a 31 year old male. I had my surgery at the Cleveland Clinic in 1980 at the age of 3 months old (so I'm told). The Doctors/Surgeons name was Hahn (not 100% sure on the spelling). My mother had to have a C- section as I would not come out via regular means. I only had a few follow up visits but stopped near age 6 or so. I was tested prior to going into the USMC and that apparently didn't find anything bad...
Long story short about the military, boot camp was a breeze, finished as Iron Man of my company (most physically fit) shaved head lead to scapegoating...scapegoating got worse in MOS school and even worse in active duty (unchecked by authorities more & more) but I'm stronger & wiser now because of it.
My parents buried themselves in student loan debt with my older siblings...so I opted for the military. I tested well getting into the military, very well, but the recruiter needed spots in a different MOS than what I had aptitude for and I was coerced into that route. Everything turned out okay in the end (I'm still alive and out of the military).
I did academically test well as a child (gifted some years, some years above average). Still tested well throughout life even now, unfortunately I never did homework and was a master of pretending that I did (to those who would check) and grades increasingly were based off homework, not tests. Finally did homework in college and graduated with honors.
As far as side effects later in life:
I did notice that my face is non-symmetrical and hope to at least get nose surgery one day. I also noticed that my sinuses are prone to infection and must be of odd shape, and perhaps deviated or smaller than normal...I found that eating hot/spicy foods helps me avoid sinus infections and prevents me from snoring at night.
My vision is terrible, but I can wear contacts...doctors seem to differ on opinions when it comes to Astigmatism...I go with the ones that say I don't have it. My current doctor says that I have unusually strong lens-control-muscles (probably due to my stubbornness to wear anything stronger than I need). I can't help but wonder after reading more about Craniosynostosis, perhaps my eye sockets are to blame and not my lenses.
Dentally, my mouth is a bit screwed up if you look closely, Im told surgery and braces could correct this. The bottom jaw is seemingly misaligned to the upper jaw and seeming underdeveloped (one tooth-width behind the upper jaw all the way). The teeth are all close like normal and normally shapedjust non-symmetrical right vs. left.
I always wondered if I should have children, if it would be the wisest thing to do. Of course I wanted to and was compelled to when I met the love of my life, my wife. They say opposites attract, and there is s reason for that, thankfully it turned out true for us but this may not always be the case. I say still better to get checked. I have 2 healthy children (ages 3 and 5) who I was, and still am, worried about, although I think any signs would have showed up by now. I just hope they are not carriers & I hope that gene knowledge will be even clearer by the time they are married & considering childrenI intend to keep them fully informed.
Science states that the further apart the gene pool is the better chances defective genes will be left behind and healthier genes will be carried forward if anything by probability. The closer the gene pool is (i.e. incest) the more likely defective genes will be carried forward if not multiplied/magnified. I went about as far from my gene pool as is possiblebut not completely on purposejust so happens, my wife was seeking me before I ever saw or knew of her. It did help that I had the long time preference for different racial background, especially far removed and different than my own.
Lately Ive been reflecting on my life and how it was changed by Craniosynostosis. If I have my hair a certain way, no one ever knows, but I weigh the pros and cons of different styles and found that I dont care if people stare at the scar (especially if its hot weather), Ive been through worse. Even when people ask about it I can tell when the question is from angst, harmful criticism, or from simple curiosity. 99% of the time its from innocent curiosity & I dont mind explaining to nice people. The negative people I tell that I had a motorcycle accident, a brain transplant, or Im a government experiment in cybernetics depending on context.
Im thankful that my parents caught it early on and that I didnt have any other physical side effects. Im very fortunate. I had a father who made me believe that anything is possible. I still believe this today. I had a mother who smoked cigarettes
Im the tallest of all my siblings, but still considered average height in general. I have the highest IQ out of my other siblings & parents (~128 last I checked). I run marathonsin my bare feet. I was a skilled swimmer growing up and plan on getting back into it soon. I make my living off of engineering information technologies (my co-workers have said that they like the fact that I look at things differently than they do).
I do believe that although I have the mutation of whatever caused the Craniosynostosis, other positive things came from it. I may be forever searching for more of the brighter side. Who knows what may be found, but we need to try. With that said, I do think many (not all) mutations are caused by toxicity found in modern materials and processed food. Just like arsenic is poisonous to us at the DNA level (too similar to DNA native phosphate & thus interruptive), so could other elements. We need to think and be careful with what we consume, especially considering children and future health. On the same token, we wouldnt be here without mutations.
Link of interest:

http://www.womansday.com/life/personal-stories/real-life-identifying-a-rare-birth-defect-112668

I was born May 2, 1980. I had my surgery weeks after I was born. The surgery, and my birth was done in Tucson, AZ at the Davis-Monthan Air Force Base hospital. I've had a pretty normal life. There's one thing that I contribute to the surgery; I have the worst migraines. They get so bad, it makes me wish I were never born at times. I too have astigmatism. But now reading these posts, I should talk to my doctor. I also have a slight overbite, but nothing major. I have the nasty scar. It used to be from my forehead to my nape. But with the years, as I grew, it's gotten smaller. It starts about a half inch from my hairline and ends about a half an inch from the base of my neck. I've always been extremely careful with my head. My mother explained to me as I was growing up what I was born with, but for me, I didn't know that I was born with that rare of a condition until a few years ago. Knowing what might have happened if I didn't have the surgery makes me thankful that my parents did opt it for me. I too am concerned about passing it to my children. They say that only 1 in 2500 babies are born with it, but still. I don't want my children, or their children to be affected by this condition. My head does have the lovely lumps, and 2 "soft spots" that are tender to touch, much like the temple of your eye. I was looking up side affects of post-crainosynostosis patients to see if I'm the only one suffering from these awful migraines when I came across this thread. As it's a rare condition, I don't know anyone other than myself who was born with this condition, and don't know what should be normal. I currently live in South Dakota, and the neurologist here couldn't help and sent me to bio-feedback. That didn't work for me. Are these migraines normal for post-crainosynostosis patients? I've had mri's done, and they didn't show anything "unusual".

I heard 1 in 10,000 when I was younger...hope that isn't a sign of increased frequency. As far as the migraines go, I've only gotten them as a result of sinus problems, when my contact lenses are getting old, or my glasses are continually sliding out of place/focus. If I correct the aforementioned problems, my migraines cease. I think I also may have gotten them from poor diet plus stress in the past. Managing both also mitigated the migraines. In recent history, I only get them from sinus congestion or bad contact lenses.

So happy to have found this. My identical twin daughters had the surgery when they were 18 months old. I know that is late, but we had just adopted them, and had the surgery done asap. One daughter has CP and the other does not. They are both very bright and fun 10 year olds. They are both very self-conscious about the scar on their heads. I wonder if anyone has found any way (other than combing the hair a different way) to minimize this? I suspect as teenagers they will be even more self-conscious!

@ Yaelchai
For the scar, I don't hide it. In fact, I wear my hair parted, regularly, and people think that it's normal. When I was 16, one of my male friends who would also part his hair asked me how it is I would get my hair to part so perfectly. I also think that if you talk to them about what happened and what could have happened without the surgery, they will embrace their scars. That was the case for me, anyways. :)

@ Brandon
I'm glad you've got your headaches under control. I've eliminated the stress from my life, and do eat regularly, and healthy. I do wear glasses, but don't need them often as I'm near sighted and only need them when driving long distances. As for the headaches themselves, there's a distinct difference between a pressure headache and the ones that I am describing. The pressure headaches start at my temple, behind my eyes, or about my brow line. The migraines start at one of the two soft spots that remained due to the surgery (one on either side of the scar). If I barely touch the area, it tosses me into a worse world of pain when I have one of those migraines.