
Craniosynostosis & Plagiocephaly Support Group
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. Plagiocephaly is a condition characterized by an asymmetrical distortion (flattening of one side) of the skull. It is a common finding at birth and may be the result of a restrictive intrauterine...
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.
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
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. :)
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.