A Cranio Kid A Long Time Ago

[Spicer]

Well Im not a kid, no not hardly. I was born with this disease 49 years ago. It was a lot more invasive an operation back in 1957. This support forum is a valuable tool in helping families cope and understand. My condition required 11 operations due to complications and the lack of knowledge on treatment. Although the procedure was quite invasive there were no physical complications. I rarely even get a headache.

Unfortunately back then there were no support groups, and my mother felt a heavy burden and responsibility. I believe my father felt that due to my condition and operations that my intellectual capacity was limited. The combination of my parents thinking caused me to have a very protected childhood. There were no expectations or goals placed on me by my parents. This ultimately caused me to do very poorly in school and effected my self esteem. I am making this point so that you as parents don't make the same mistake.

I knew I was different ,and remember at a young age being teased once in a while, but I was more effected my parents who treated me different from my sibblings. I am not at all blaming them, but they let me get away with anything I wanted. I even started believing that I had a learning disability due to my condition. Well finally my parents had me tested and I did outstanding. That was the beginning of believing in my self.

I have to go, but will finish my thought in the next day or so.

[Lauren]

Your message will help so many families. Thank you for sharing.

[Jennifer]

Welcome! I'm glad you found us. I can't wait to here more of your story. Your insight will be no doubt be of tremendous help to some of us.

[KALEMSMOM]

Welcome and you will defenitely shed some light on us. I constantly worry about Kalem's development. Your story will definetely enlighten some of us.

[verdon2]

:icon_mrgr Welcome and Thank you for your story. It was nice to hear that you had no further complications, it helps to ease anyones mind who have been through such an ordeal. Looking forward to seeing pics and hearing more of your story......:thankyou

[craniomommynbaby]

Welcome to the board! I was a cranio baby, but I had the surgery in 1977. Both my mother and my grandmother had cranio, but their docs back then just said that it had something to do with the birthing process. Your history is very interesting to me as I have not previously met people who had the surgery before me.
My parents also had to deal with a lack of support. At the time of my diagnosis, nobody around them had heard of this. They were very alone and scared. I am so glad that I had these boards when I had to endure the same with my son.
It is amazing how far medical technology has come, too. They can do so much more for the babies nowadays. You said you had 11 procedures. I am definitely eager to hear more of your story when you have a chance. I probably had a strip craniotomy, and I just had a neurosurgeon. I am so glad that a plastic surgeon in involved nowadays. I was in the hospital for a month while my son went home at 3 days post-op. It is so hard to get much more information than that. My parents did not keep a journal, and my medical records are too old to retrieve.
Thanks for posting. There is a great bunch of parents on this board, and we love to chat. Please feel free to hang around even after you finish telling your story.

[Spicer]

Continued-
I was very pleased to get such positive testing results back. Wish it was done sooner because all through elementary school I was barely passing. It was obvious, even to me that I was making excuses and not applying myself. As I matured I began pushing myself, no longer did I want to be the class clown, nor did want anyone to look at me different. I had gotten myself labeled and was placed in the slower learning classes. By 8th grade I wanted out of this environment and really started applying myself.

My introduction to a new group of kids was through the cross country track team. As my success grew at the meets, so did my acceptance from the team(all the kids were driven and in academically accelerated programs). Altough I had been doing well in school my father persuaded me to go into a vocational program in high school. I had an aptitude towards technology(my father was an electrical engineer) and breezed through the curriculum. Although I was going to a vocational school I chose to take college prep courses as well. My cross country coach was the physics teacher and decided to take along with chemistry. Again I had success, but still had doubts regarding continuing on to college.

Although intellectually I has challenged myself, I still felt like an outsider. I had quite a diverse group of friends. There were times I felt on top of the world, and others when I felt I did not fit in. Obviously there were some psychological scars.

My father was an alchoholic which probably did not help with my social skills. He rarely gave me advise, and wasn't one to confide in either. When he was drinking (yep he would have whiskey in his first cup of coffee in the morning)he could be rather abusive, one comment he made was that my head looked like world war three. Not sure why he made that comment, but it certainly stuck with me. He obviously had some issues. He died from the disease in his mid fifties.

Where am I now, still have some issues, but I believe my environment caused most of them. I believe if I had been treated as a normal healthy child, my feeling of insecurity would have been minimized. I have always worked in the medical technology field. I have worked my way into a very successful director position. Although I was successful in business, I went back to college at night and finished in 2000. Yes my mother was very happy and proud.

I have been married for 23 years and have three children. All are healthy and well adjusted. Two are in college and one has is in the construction business.

So how did I find this site....well the catcher for the NY Yankees Jorge Posada's son has this condition. I heard a commercial for a website he set up and started searching and found this site.

I have searched this site and found it is a tremendous resource for parents and families dealing with this issue.

I hope you found my experience somewhat enlightening. I plan on posting again... I actually dated a cranio girl!

[verdon2]

:uh It sounds like growing up was rough for you and I am sorry you were put through some awful things. But on another note you now sound like things fell greatly in to place and its nice to hear.:icon_mrgr Its also wonderful to hear your children were all cranio-free, Thank goodness. I hope you hang-around, you really may be able to help some individuals. Thank you once again.....:yes

[Jennifer]

How fasinating! Thank you so much for sharing. Again, I'm glad you found us and I hope you stick around.....it's so amazing how things have changed over the years.

Do you know which sutures were fused? Do you know why 11 procedures? So many questions..... :giggle

(Oh, and way to leave with a teaser :giggle- What happened w/ dating the cranio girl???)

[Katie]

Welcome, and thank you so much for sharing your story with us! You have overcome some very difficult obstacles in your life (a couple of which I can relate to), and it is wonderful of you to use that as a tool in helping others.
I know that your story will be comforting to parents who may be new to the diagnosis, as they will be able to see what an intelligent and caring man a cranio kid grew up to be! Please stick around, we'd love to get to know you more!



:welcome

[Matthews Mommy]

:colors Thanks so much because I tend to make those mistakes with my Matthew (letting him get away with more) I always wonder about and worry about his adult years so he gets more protected, but all things aside he also has autism so I over do it sometimes. Thank you for making me see now while he is young so I can try to apply new tactics to my parenting and maybe stop some damage before it is too late. Look forward to hearing more.
Josette:icon_mrgr

[Spicer]

How fasinating! Thank you so much for sharing. Again, I'm glad you found us and I hope you stick around.....it's so amazing how things have changed over the years.

Do you know which sutures were fused? Do you know why 11 procedures? So many questions..... :giggle

(Oh, and way to leave with a teaser :giggle- What happened w/ dating the cranio girl???)

I don't know which sutures were fused. I have quite extensive scaring which includes from ear to ear area, both frontal and back portions as well. I know the hospital/doctor accidentally left some stiches in that created major infections and complications. This procedure I believe was fairly new at the time and I believe I had to have a revision or two as well.


Cranio girl was a wonerful young lady, Dale who I dated in 79 and 80. We met through mutual friends and had a great time. Actually she was a little too nice for my taste at the time. I was in my prime and was not looking to get serious. Well... the way I found out was we were laying on her parents couch and she started to run her hands through my hair. Well I felt a little uncomfortable, and did not want to startle her so I mentioned my operations. To my surprise she had the same operation, and we laughed about it. I kinda chuckle just thinking about it. Another chuckle I get was when I told my wife to be about it. I must of had a serious tone or expression, because she thought we were breaking up.

Its funny I never share my medical history with anyone because I have attempted to put it in the past. I must admit it is nice sharing it with a group who have common experiences.

[Jennifer]

Yay! Glad we can help!!!! Share away.....my husband has often asked what we will tell Emily, when we'll tell her, what she'll think etc.....as she's too young to remember the first surgery and I think soon she won't remember the 2nd (not that she really knows what happened- just that she was in the hospital and she had an ouch on her head!)

Thanks again....That's so funny about the girlfriend...what a small world!

[verdon2]

We plan on telling Maggie the whole story. Wht try to hide it? She is beautiful and the scar isn't even visible. We have pics for when she's old enough, its something she deserves to know about...

[Mom2William]

Welcome and thanks for sharing! I think it is wonderful and amazing that you were able to overcome some major obstacles growing up. I can relate to some of them too.
Thank you for the insight on not putting high expectations on our babies! My cranio child is my third and last and I can feel myself cutting him lots more slack for bad behavior since the surgery. O.K. - at least I am aware of it now! If only he wasn't so dang cute!:icon_mrgr
William knows that his had his head *fixed* and he loves to look at his surgery pictures- I am not planning on keeping it from him either. He overcame a lot!!
We all have survived this both as patient and parents

[Lauren]

Matthew knows all about it. He also knows that when I'm on the "purple computer" (which is what he calls this page) that I am talking to other parents whose kids had the same operation he did. He's also becoming quite used to me showing his scar whenever I can tell someone about it!!

[Jennifer]

How cute- the purple computer!!!! Emily's not old enough to really tell about it yet.....I did finally get her pics printed from the surgery in April....she was looking at them and made the ugliest faces once she saw her pictures when she was in the hospital jammies- I didn't show her the upclose ones- I figure if just the jammies upset her- I'm not sure what the stitches would do :giggle. I'm sure in a few years she will find it facinating.(apparently I can't spell at 11:30 at night!)...

[plukids]

Welcome to the board and thank you so much for sharing your story. It must have been hard to go through so many surgeries and then to be so sheltered. I try to not treat Sylvie any differently than the boys.....besides her being a girl that is:giggle It is easy to want to shelter her. Your story encourages me to continue down the right path parenting a craniokid.