My story about my scaphocephaly surgery

[Trish]

Hi! My name is Trish and when I was 2 1/2 months old I had scaphocephaly surgery. I'm 28 years old now. My scar is the shape of an S going from front to back. My hair covers up my scars. If I seperate my hair you can see parts of the scar that is still left. I was the first case the doctor I had at the time had ever seen when I was born.

Recently my head has been sensitive if I push on it in certain areas. If I bump my head it hurts also. I will get a bad headache afterwards. I have not been to a doctor yet about this but I will be going soon to see if it has anything to do with my surgery.

I have an indention on my right side where a babys soft spot would be. Almost like part of my head sunk in. It's not noticable unless you touch the area and feel the indention. My hair covers it up. My head on top is also bumpy.

I remember that when I was a kid I couldnt not do head stands or anything to do with putting pressure on my head because it would hurt. It's still like that to this day. Other then that that's all I can remember.

My mom does have pictures of my head after surgery. I will get those from her sometime and scan them and put them on here.

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Here are pics of me before surgery and after

a few weeks before surgery:
http://img.photobucket.com/albums/v404/arcticgirl81/pics/Document575.jpg

Day of surgery recovering:
http://img.photobucket.com/albums/v404/arcticgirl81/pics/Document578.jpg

Day after surgery:
http://img.photobucket.com/albums/v404/arcticgirl81/pics/Document577.jpg

7 days postop and finally home:
http://img.photobucket.com/albums/v404/arcticgirl81/pics/Document576.jpg

I dont know how long after this one was:
http://img.photobucket.com/albums/v404/arcticgirl81/pics/Document572.jpg

[dannlark]

Welcome, Trish!!! So awesome to have an "old timer" here on the board!! Looking forward to seeing your pictures and it's so wonderful to hear that you've done well... Did the Dr's ever give you indication about closing those gaps or why you have such sensitivity to certain areas? Hope you'll enjoy us all picking your brain on all things cranio from your perspective. So glad you found us!!!!

[*jules*]

Welcome, Welcome, Welcome!!! So glad you found CK and I also can't wait to see some of your pics :)

I'm sorry you're having some sensitivity and headaches...hope you can get some answers and relief after you see your doctor. Please keep us posted.

[Nezzy]

Welcome Trish! Where was your surgery done at? I'm just curious since you are from Michigan. Welcome to Cranio Kids. It is always interesting to meet adults with cranio and hear their stories.

[Janet]

Welcome Trish!! Thanks for sharing your story with us.

[mimi]

So nice to hear your story. I, too, am curious as to where you had your surgery. My son was sagittal, like you. I'll be looking for your photos soon. We'd love to see a current one, too!

[evergreenmom]

Welcome to ck and thanks for sharing your story- I would love to see pics too! we love hearing from people who have been through all this and how having cranio has affected them.... kind of like a crystal ball to see how our kids will do!! Your message is reassuring!! This area of the forum is new so not to many posts yet, but there are other cranio adults that stop by from time to time so it could become a great way for grown up "cranio kids" to communicate with one another!! Anyway, best wishes and keep in touch!!

[Perla]

Welcome Trish
I am so happy to hear from you.. my son had the same surgery 3 months ago, only that his scar goes from ear to ear.
But it is great to know you are doing well after so many years.
Hope you can follow up with your doctors soon, so you don't have to suffer from frequent headaches, etc.
Let us know when you post the pictures.

Thanks,

[Jenny]

Hi Trish! I'm also a craniokid. I'll be 30 in sept and had surgery at childrens in 81 and 83. I see you're from michigan as well! I was wondering if you knew who did your surgery?

[Leighasmom]

Welcome Trish thanks for sharing I can't wait until Leigha is older and wants to share with all these new moms(can you believe she's double digits this July?). Can't wait to see pictures Trish!

[fitmomof2ae]

Welcome! It's great to hear stories of Adults with Cranio. My son had surgery for sagittal synostosis the day before he turned 11 months. He wasn't diagnosed until 9 months. I look forward to seeing your baby pics and learning more about your experiences. I'd love to see a current pic of you if you're willing to share it. I's nice to see how the head progresses. Thanks!

[Trish]

Welcome Trish thanks for sharing I can't wait until Leigha is older and wants to share with all these new moms(can you believe she's double digits this July?). Can't wait to see pictures Trish!


I just wanted to say that I found this forum from watching your youtube video. I was searching online for video's and found yours.

[Trish]

I believe I had my surgery in Midland Michigan at the mid michigan regional medical center. The doctors name who did my surgery was Dr. Gueramy. My mom also said that when I was born and until after surgery I wasn't able to turn my head from side to side because of my head.

I will get the pictures of my surgery from my mom no later then this weekend. I've been so busy at work this week that as soon as I get home I want to do nothing LOL....I will also get my husband to take some current pics of my head and see if he can get some pics of my scars that are left.

My dad believes he also had the same kind with his head that I did. He has the "football shape" as he calls it. His was never looked at though and taken care of so I believe mine might of been genetic. Not for sure though. When my dad was in school he said he was always called "football head".

I also want to say thank you for all the welcomes. I'm glad I finally have a place to go where people understand what i've been through.

[mimi]

We would love to see pics of your dad, too, if he doesn't mind. I'm so sorry he had to endure such teasing in school. :(

[Trish]

Here is a picture of my dad. He's holding my 2 kiddos. You can see his head is narrow. I will have to find a picture of him from the side so you can see it from that view. I don't think he had it very bad either.

http://img.photobucket.com/albums/v404/arcticgirl81/dad-1.jpg

[mimi]

My mom also said that when I was born and until after surgery I wasn't able to turn my head from side to side because of my head.

My son was like that, too, when lying on his back. He would always have his head to one side. It was so pointy in the back. Before we knew it was cranio, I can remember thinking, "Well, at least he won't have a flat spot on the back of his head."


I'm glad I finally have a place to go where people understand what i've been through.

You look fabulous! Has it been something you've struggled with? I'm just wondering with the early correction what kinds of issues you have faced through the years (besides the ones you mentioned). Any emotional issues?

Your dad looks great, too. I can see the narrowing, though. Would love to see more photos of him from the side and top.

Thanks so much for sharing. Your kids are adorable, too!

[fitmomof2ae]

Trish,

You look great! I'm glad to see that your boys didn't have cranio.

[momof2withcranio]

Welcome. Thank you so much for sharing your story and pictures. Your children are absolutely beautiful. Your dad is nice looking as well. You can see that his head is narrow. Both of my sons are saggital. When my oldest son was a baby his ped told me that his head looked like a football. (that was the best way for her to describe what was goin on in laymens terms.) She also told me that some dr's in residency would call saggital kids toaster heads.. Insulting i know trust me. I was and am offended still about the name. Anyway.. I lost my trian of thought..

Welcome to CK and can wait to see baby pictures of you and recent pictures.

[Peytons_Mommy]

Welcome and thank you for sharing your story. My daughter is sagittal to and is 1 month post op today and is doing fabolous. its great to hear from adults with cranio and to see that they go on to live normal happy lives.

[Monica]

Welcome to CK. We're so glad you stopped by and are willing to share your story with us.

[mimi]

When my oldest son was a baby his ped told me that his head looked like a football. (that was the best way for her to describe what was goin on in laymens terms.)


What the heck?! "Your son's head looks like a football," that's the best she could come up with? As if you did not already know what his head looked like! Sheesh.

[Trish]

I posted pictures of me of surgery in my first post. I have pictures of the top of my head after surgery but I just need to scan them and post them. Give me a couple more days :)

[Leighasmom]

I just wanted to say that I found this forum from watching your youtube video. I was searching online for video's and found yours.


:heartbeatThanks for letting me know I was devestated when Leigha's web page went down early this year thanks to yahoo getting rid of Geocities:sigh my you tube video was my quick attempt to get our info back out there so glad to hear it does lead some people to the right organizations.

[fitmomof2ae]

Trish -

Thanks for updating your post with baby pics. It's nice to see the progression. You really do look great!