56 year old with treated cranio

[Tristen Greenleaf]

Thanks for writing Lars. I too am one who had sagittal surgery over 30 years ago and have a long, narrow head with a long scar and camel hump with caving in the back and sides. I never had it fixed but definitely can relate to all the struggles you had growing up with sports, hats/helmets, duck duck goose, NEVER considered head stands, and those ever wandering random hands. I am female and HOPE to not lose my hair as I am over 40 now but struggle even now with how it effects me. Explaining it to salons, friends, people sitting behind me, or yes, still touching my head randomly. I didn't think that would happen after 15 years old. In any case, thanks for sharing your story. I have a twin and two other brothers who have normal heads. It was cleary not a syndrome in my family, rather, an effect of being a twin and where I was located in the womb. I still get headaches from helmets.

[JWx4]

I am a little late, but your story and so many other stories on here are so touching! I hate that people are so rude to one another. Everyone is different in their own kind of way and no one is perfect. I don't have cranio, but I have my own faults and insecurities. My son has a Metopic Ridge and was diagnosed with Cranio/Trigonacephaly by one dr but then told by another dr that he just has a ridge..It has been a struggle to decide between surgery or no surgery. Then he has Plagio and we are getting him a helmet to fix that...I just want to make the best decision for him since he is too little to speak for himself. All you can do is hope you make the best decision for your child. I hate that people can be so judgemental. I wish everyone the best.

[monty]

Lars what's happening man. How r things treating you?

[Lars]

Hi Monty,

It's good to hear from you.

I'm just hanging out - working and playing golf - enjoying the summer.

I have been in and out of this forum a few times. I have been following your story with great interest and wishing you the best possible outcome...

[monty]

Thanks!

Golf hey! A good way to spoil a good walk lol! No I really like golf. I've only plaid twice though and been up the driving range twice as well. It's so satisfying to get a sweet strike of the ball and hear that sound it make when it's hit nicely and you watch it fly. I find actually playing the game itself highly annoying though because I'm rubbish.

Enjoy the sunshine! It's been absolutely chucking it down here, typical English summer lol! I don't mind the rain but it's a right pain if you're laying patios or turf. It's put all my jobs behing schedule

[craniomommynbaby]

Hi, Lars!
I'm another cranio adult and just wanted to send my greetings, even if it is a bit late. I am 34 and had surgery as an infant for right coronal. The neurosurgeon opened things up to give my brain room, but there was no plastic surgeon involved to account for the asymmetry. I also had an eye muscle surgery around the same time, but that did not correct my lazy right eye. Growing up, like you, I felt like the only one. I really did not realize how many there were out there until my son was born with bicoronal and I found this site. I don't feel alone anymore, but I still feel kind of like it is "my" condition. I realize that I don't own it or have exclusive rights, but it is just a feeling I have after growing up with it and not really having anyone else to relate to. I still have an opening by my right temple, which meant wearing a helmet during P.E. and avoiding sports with hard balls. My son's neurosurgeon said that he could work on it, but I am choosing to just leave it alone. Life is good enough for me, and I don't want to risk my mental faculties in any way. (I am a math professor.)
Thanks you for sharing your story. Just reading your comment about how alone you felt growing up helped me. It is nice to realize that you truly are not the only one!

[Lars]

Thanks!

Golf hey! A good way to spoil a good walk lol!

That's why I ride in a golf cart - no sense spoiling a perfectly good walk, LOL!

[karlila]

Hello Lars,

I am sorry it took me over one year to reply, but as you may know life is so busy with a toddler around the house. Regarding your question, my idea was that Agustin was not old enough to decide for himself, and by us making him undergo further "cosmetic corrections" would impose on him our personal belief about his self image. Basically I thought that I would not want my mom imposing me to undergo cosmetic surgery, but after your story, I realized the importance of taking risk, informed decisions, and playing an active role as a parent in cranio patients. Btw, I did find the surgery experience traumatic for our entire family.

I hope you have a great week!

Karla

[HSPcranio]

Ty for sharing your story lars.

[Lars]

Hi Karalila,

In this case - it's better to ask for forgiveness than permission. I can believe it must have been traumatic for you. Putting your child's life at risk must have been frightening. For my part, I had my first surgery at age 2. I don't remember any of it other than an image of standing in a crib in the ward after surgery. I never resented my parents' decision to have surgery done. It probably saved my life. I just wish it had been possible to do more.