56 year old with treated cranio

[Lars]

I am a 56 year old male with treated cranio. I had 2 or 3 surgeries (performed by a newbie doctor) as an infant that left me with a long, narrow head with a camel hump and trenches on either side and a long, front-to-back scar.

Nobody knows what caused my condition. I have 3 normal siblings. I learned early not to question such things because it only made my mother feel guilty. It was clear that everyone had done everything they could and it was my job to get on with life and not burden anyone. I observed the cardinal rule - never talk about it and never complain.

I got through my childhood avoiding hats, helmets, headstands and stray hands. This was particularly difficult as boys are expected to play sports and I loved sports. My dad would always cut the bands on my baseball cap but I had to give up baseball when batters' helmets became mandatory. Football was out of the question. Dad never said anything but I always felt I was a disappointment for him.

None of that compared to the guilt my mother felt. The shame in causing this and the inability to fix it was a source of great pain for her and that burden was transferred to me for if I was not totally OK with my condition, it would only make her feel guiltier. Imagine being a little kid feeling like you have to make your mother feel OK about your affliction.

The shape of my head has ruled my life ever since I can remember. My primary goals in life were to avoid detection and attention. I always felt that I was in the world but not of it. I would avoid examination and comparison like the plague. At the same time, I would be constantly comparing myself to others - wondering who's head was like mine had I been born normal and even trying to find someone else who was like me. It is like being a racial minority but being the only one - anywhere. A minority kid can find others to identify with eventually and a culture to feel part of. I only found this place (craniokids) at age 56 and, from what I can tell, the cranio culture just seems to be people and their who want to be normal.

I can not remember a single prolonged period in my life since I was 11 years old that I did not wish for it to end. I saw life as a long gauntlet I had to get through where I never knew where the next blow would come from. As I approached my twenties and my hair began to thin, I knew I would not be able to hide any longer and I sunk into melancholy.

By this time, I had left home and had a good job with a good health insurance policy. I began shopping for a plastic surgeon. The first one blew me off almost immediately. "I'm a physician not a magician" he said. That was clever but was I supposed to laugh? I sank deeper into depression and gave up for a while. I eventually made an appointment with a surgeon who, as quickly as the first doctor had blown me off, offered a solution that gave me real hope of a normal life. I remember feeling like I was floating all the way home from that appointment. It was 30 years ago and I still remember it like it was yesterday. I knew I would have to open myself up to the gauntlet again - having to explain the surgery, ask for time off and the inevitable comments and jokes about brain damage but it was the last time and it would be worth it.

I had my 3rd (or 4th?) surgery at age 26. The plastic surgeon chiseled down the camels hump and inserted a plastic prosthesis into each trench. It took a while for the swelling to subside and my thinning hair to grow back and I was a new man with a new lease on life. I felt I could get through life without hiding in a cave. Not having to deal with the eyes that always wandered up there and the quizzical stares or the rare comment. I was free and as close to normal as I thought I could get. Better than that - I had taken my fate into my own hands and stopped asking permission to fix myself.

But old habits die hard. It did not take long before my old demons returned. I was quite practiced at staring at noggins - especially my own. I was obviously still defective. The edges of the prostheses were (to me) as obvious as the original surgey. It only took a few more curious stares to plunge me into that old frame of mind. 10 years after that surgery to end all surgeries, I was doctor shopping again. Fortunately I now live in a much bigger city. A willing surgeon was not difficult to find and the task was not difficult. He just had to pop those prostheses out and carve them down a bit. I was back on cloud nine but back at work explaining myself.

That was 20 years ago. I have had the occasional comment since but mostly about the scar. That doesn't bother me. Everyone has scars. I don't explain when asked and nobody pushes the subject. I'll be retiring soon and there will be no more gauntlet - just the occasional pang of self-conciousness. But I'm OK. I got through life OK. But I tell you what, if they ever come up with a viable total skull replacement procedure - I'm there.

My advice to anyone is to get as much help as you can as young as you can. When I had my last surgery my mother said to me "I didn't know it bothered you". How could she know? I was told since I was old enough to crawl that I was not allowed to let it bother me.

[Janet]

:hugg Welcome to cranio kids (and adults) thanks so much for opening up and sharing your story with us. I'm so sorry that you had such a hard time growing up with this. May I ask what part of the world are you from? There are a lot of adults with cranio treated and not treated on this site.

[cheryl2]

Thank you for sharing your story. Welcome!

[Monica]

Thanks so much for joining us. It's wonderful for us to have this resource and support, its a shame you and your mom didn't have something like this when you were younger. I'm so glad someone was finally able to help you. You offer a very deep perspective for those of us who deal with the "cosmetic" aspect of this surgery. We would want to spare our children whatever isolation we could. Thanks for sharing.

[kfa329]

Wow, what a story and what a journey! Thank you for sharing!

[Jenny]

Thanks for sharing your story, and your journey! It's amazing how far medicine has come. I am also a corrected cranio adult, bicoronal. I had two surgeries, the second to fill in where the bone didn't heal, which still didn't heal but it was never pushed. I'm ok with it, but i do find myself wishing to be normal. But I'm married and my husband thinks i'm beautiful, and I have three gorgeous kids, of which my oldest also has cranio. She has the same as mine. But she has only needed one surgery, and they did exactly what you wish they could have done (to a point anyway). They toook her entire skull apart, shaped it normally, and put it back in. They gave her eye orbits and a bridge to her nose. If only we could have been that lucky back then.

Anyway, so glad you shared and good to have you here. :adore

[Nezzy]

Thanks so much for sharing your story. I think it will really help parents debating on surgery.

[fitmomof2ae]

Lars - Welcome to ck! Thank you for sharing your story with us. As a parent, I am trying to do everything possible for my son while he is young to prevent him from going through additional surgeries when he is older. My son had sagittal surgery almost 2 years ago. Unfortunately, he has developed a "bump" since surgery. It sounds similar to the camel hump you describe.

If you have a chance, look at my son's pics on my profile and send me a private message to let me know what you think. We are going in for another ct next month to determine the reason for the bump. We'll come up with a plan after we get the ct results. Thanks again! Your story will help many others who are struggling with the decision to have surgery or not to have surgery.

[G2sMama]

Wow! Thank you so much for sharing your soul with us!! What an amazing journey you have been on. Welcome.

[andrews mommy]

Thank you for sharing. It's too bad you could never be open about it as a child but you've helped me realize that if my son should need more surgery it is for the best. Thanks again and welcome!

[monty]

Hi

Very moving story. I totally related to it, especially about being a minority of one, that was exactly how I felt!

Thanks so much for sharing!

[skinny237]

Thank you so much for sharing your story!

[charliesmummy]

Wow what a story, thank you for sharing with us x

[jjmc123]

Thank you so much for writing this. I have been thinking all day about my son's upcoming meeting with his ns. My son is 4. He had surgery as a baby, but his head is still severely asymmetrical. I question all the time about how much of it should I push to have corrected at his next surgery in Feb. One of my concerns is sports. He can't wear any hard helmets the way his head is now. I think it will be in his best interest to push to get as much corrected now. I appreciate your honesty.

[Lars]

Thank you so much for writing this. I have been thinking all day about my son's upcoming meeting with his ns. My son is 4. He had surgery as a baby, but his head is still severely asymmetrical. I question all the time about how much of it should I push to have corrected at his next surgery in Feb. One of my concerns is sports. He can't wear any hard helmets the way his head is now. I think it will be in his best interest to push to get as much corrected now. I appreciate your honesty.

It was never my intention to offer advice to parents other than to be open to what your child wants or feels. You want what's best for your child and he is too young to make decisions right now so it all depends on you and your doctors. Please don't make decisions based on my story.

For me, staying "in the closet" was all I ever wanted and surgery has allowed me to do that. And as painful as my story may seem to some, I played the cards I was dealt and I have had a very good life - better than most. If I had known I had some cards earlier I might have spared myself some anxiety but I would not trade the life I have now for anything.

[*jules*]

Hi Lars and welcome to CK :) It's great to have you here. My son had surgery for metopic when he was 8.5mos old and while I've never regretted that decision, I have had moments of "what if we choose not to go thru with surgery?". My son was perfectly healthy at the time (altho slight delays crept up later) and my biggest worry was mostly the cosmetic aspect....how would he look, how would others treat him, and most importantly, how would he feel about himself? Reading your story gave me a small glimpse into the psychological issues that could come from something like this....thank you.
I would say I'm sorry for the hardships you've endured, but it sounds like you have come to terms with all of that and are in a better place now. You're a great addition to this site and I'm sure you're perspective and experience will help many who are struggling to make the best decision for their children who are too small to make those decisions for themselves. I've seen many here debating surgery vs. no surgery and wishing they had a crystal ball to look into the future. I know that your experience is unique to you, but I also feel that you're (in a way) that crystal ball which lets us get a peek at what life could be like for our kids if they grow up feeling ostracized and abnormal. Thanks for sharing.

[BrendansMummy]

Thank you so much :) And a big warm welcome too

[Lars]

Hi

Very moving story. I totally related to it, especially about being a minority of one, that was exactly how I felt!

Thanks so much for sharing!

Hi Monty,

I've read your thread - well most of it. It really brings back a lot of old memories. I don't want to jinx you but I hope the surgery thing comes through for you.

Cheers,

[monty]

Hi Monty,

I've read your thread - well most of it. It really brings back a lot of old memories. I don't want to jinx you but I hope the surgery thing comes through for you.

Cheers,

this site is just bloody amazing. I could have done with finding it about 10 years ago, at least 5 but never the less.

thanks so much for the thought. Such a shame this site wasn't here for you when you went through your toughest times. But hey you got here hay!

So nice to know I am not alone!

Peace

[Lars]

It's hard to imagine what positives any parent can draw from my story. I survived years of self-loathing and found a measure of peace. This is what I wish for Monty and anyone else born with this condition. I suspect most parents would want more for their kids.

[monty]

You keep writting my mind. It's both comforting and disturbing. I am glad you have found a "measure of peace". Do you think you will ever find total peace?

[G2sMama]

For what it's worth, I'm not sure any of us (cranio or otherwise) have found "total" peace.

I'm really glad you both are on here.

[Lars]

You keep writting my mind. It's both comforting and disturbing. I am glad you have found a "measure of peace". Do you think you will ever find total peace?

It's all relative. Like the lady said, has anyone found total peace?

[cheryl2]

I always think that if we didn't deal with cranio, it would have been something else. Everyone has their cross to bear in life.

[karlila]

Thank you Lars for sharing your story. Im a young mom of a beautiful soon to be 2 year old baby boy.

I frequently find myself wondering if we are doing enough for him. I understand how it is to live with a "different" look since I have had 3 episodes of bell's palsy that left me with asymmetrical face features. I am very self conscious about it, and for years I did not smile without covering my mouth. I think if only my mom would have done more research, I would have had better results, but like you I never questioned her about it. I know this is way different than what you guys have to live with, and for the same reason, I am always afraid of falling short with our son.

Sometimes, I feel I have him under this huge magnifying glass, and I cannot stop feeling guilty about it. I really try to treat him normal, and not make a big deal about his craniofacial features, and I guess that is what your mom was trying to do with you.

I was def against another surgery for Agustin (as a child), but when the time comes I will keep an open mind about it.

Thanks again for sharing!

Karla

[monty]

It's all relative. Like the lady said, has anyone found total peace?

I suppose not many!

I hope the surgery works for me as well. I don't know whether I deserve it though in honesty, whether I could have been a better person.

I have always been able to lift people along with my own mental attitude or bring them down with it also. I sincerely hope that if surgery makes me annonymous, that I earn it, that I am happy and of some use to people in this life.

[Lars]

Hi Monty,

Don't you ever sleep? :)

You didn't deserve the birth defect and you are as deserving of a normal life as anyone.

I always find it ironic when I watch TV. All you see is adverts for stuff that will give you better skin, nicer hair, cleaner teeth, less fat... Nobody is told they don't deserve those things.

But if you're born with a birth defect you're supposed to suck it up and somehow be an example and an inspiration to everyone. I never wanted to be anyone's poster child.

Getting my birth defect fixed did not make me a better person. It just removed an excuse for not being a better person. I'm OK with that. The people around me are OK with that too. They can call me out on being a jerk and I have no excuse. It keeps me honest.

By the way - I'd bet there are a lot more perfect heads than perfect people...

[monty]

Yeah I'm getting about 6 hours a night these days ;-)

[monty]

I'm starting to doubt they will be able to fix me. I spoke to the secretary of the lady that will be doing my surgery a couple of weeks ago and she said to email her with any queries I had. I had alot of queries but I tuned it down to the minimum. Yet to recieve a reply. Was kinda hoping to get one before the weekend to give me something to think about.

I walked down the street without my cap today and my head shaved. Went for breakfast in a cafe. People stared and I heard a couple talking behind my back whilst I ate. I'm not very strong:no

It is pissing me off these days though as much as it upsets me. Dunno if that's better. A bit of anger at least let's one feel alive rather than the hollow feeling of isolation.

People are bloody stupid. I try to follow some of the philosophies of Buddhism these day but damn some of those people, I wish they experienced what I have felt. Terrible to say

[Lars]

Hi Monty,

I am by no means fixed and I am still self-conscious enough to wear a hat whenever I can. I am sometimes even too self-conscious to try on hats in public. My wife orders them on-line. My head is still bumpy and lop-sided. Photos of me make me cringe.

The difference is that people probably don't notice as much as they would have before the surgery. They might look and wonder what's with the guy with the long head and the high, narrow forehead but it's close enough to "normal" that they have nothing to really latch onto. It's just slightly outside normal parameters.

There will always be jerks in the world who will make fun of people for something - too short, too tall, too fat - whatever. We can't do anything about that. My mom used to tell me to punch them in the nose but that never solved anything. I preferred to avoid those situations as much as I could. I hid, basically. After the surgery I hid less but I'm still very wary and self-conscious.

I don't know what the surgeons are going to do for you. They might just deal with the most obvious cosmetic differences. You'll find out when they assess you. They have to work within what's possible.

[monty]

Unfortunately you can't punch every jerk in the nose. Logistical impossibility unfortunately and not good for Karma.

Do you think that as technology improves you will have further surgery to improve yourself. I can't imagine we are that far away from having full cranial implants to our design.

I hope they give me full calvarial vault remodelling. Nothing else will do the job I dont think! I am a bit scared though that something goes wrong. I don't like the way I look but for the first time in my life I feel that I am an ok person and obviously life is beautifull!

[Lars]

I've often wondered if I'd go for a complete rebuild. When I was younger it would have been an easy decision but I'm going on 60 and it becomes less and less important to me.. Having said that - if it was easy and risk free - yeah I'd have it done.

Update: I didn't even know there was such a thing as full calvarial vault remodeling. It looks interesting. I doubt that they would consider that for me at my age or that any insurance policy would pay for it. Very little return on investment for a soon-to-be pensioner like me.

[monty]

Aaaah 60 is the new 40 ;-)

Probably only half way with progress in science

[Lars]

I was def against another surgery for Agustin (as a child), but when the time comes I will keep an open mind about it.

Thanks again for sharing!

Karla

Do you mind my asking why you were against another surgery? Was it because you found it too traumatic for him? For you? Just wondering...

[AllyCat]

Wow. Thank you for your story. Sounds like you met with a pretty terrible doctor to say something like that. I'm sorry this has caused you so much pain, but glad you can talk to us about it and have made some peace with it.

Thanks again!

[monty]

Hi Lars

What surgery did you have then out of curiosity?

[Lars]

My folks didn't talk about it much but I gather the doctor cut a couple of strips out of my skull to allow for growth. I'm not sure how well that worked out since I had 1 or 2 followup surgeries. I ended up with a large ridge down the middle of my head with soft spots along each side.

[tux1982]

Lars have you got any pics of your head? I really like to meet others to help to not feel so alone!

[Lars]

I do not. But you should not feel any more alone.

[amandalullaby]

Lars I am on a misson be-friending all other craniosynostosys adults. There is no BEFRIEND BUTTON ON UR PAGE.

[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.

[monty]

Hi Lars great to hear from you. I've not been here much as I have been trying to blank all this out and just working all the time.

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

Made me chuckle.

Anyway peace bro:-)

[Lars]

Hi Monty. It's good to hear from you as well. I figured you were just trying to put the blinders on and just get on with things after what you went through last year. I can't blame you bro but I'm still really hoping there's something for you.

Cheers,

[Ryan S.]

Hey Lars hope all is well. I thought I had replied to your thread but I guess I did not. Amazing how much of your experience with this is very similar to mine. I tend to find that that is the case with all of us adults however.

Take care though and I guess Ill see you on the forum,
Ryan

[Lars]

Hello Ryan. Thanks for dropping by. I read your thread - at least the first few posts. It does look like a similar experience. We play the cards we've been dealt...

[CdnGirl]

Hello everyone, I'm new to this site. I've been reading and reading and absorbing like a sponge! This thread is very upsetting to me. No reflection on Lars or others, but I'm more than 10 years younger than Lars and to know that surgeries were available and my family did nothing to help me is extremely upsetting to me. I've been living in denial for years and this has now messed me up.

[Ryan S.]

Hello everyone, I'm new to this site. I've been reading and reading and absorbing like a sponge! This thread is very upsetting to me. No reflection on Lars or others, but I'm more than 10 years younger than Lars and to know that surgeries were available and my family did nothing to help me is extremely upsetting to me. I've been living in denial for years and this has now messed me up. If it helps you to know Cdn girl some of the early surgeries were not perfect. I had mine done in 1983 and despite that it is still very noticeable that I had cranio, even more so if you touch it and or I have short hair. Now what they do for the young kids today is truly miraculous.

[monty]

Hello everyone, I'm new to this site. I've been reading and reading and absorbing like a sponge! This thread is very upsetting to me. No reflection on Lars or others, but I'm more than 10 years younger than Lars and to know that surgeries were available and my family did nothing to help me is extremely upsetting to me. I've been living in denial for years and this has now messed me up.

It's harder if you have been in denial and then it hits you. I wish someone had at the very least told me as a child and were open about it. Anyway, best of luck to you. Please drop by when you get time.

Ps Lars are you still about?

[Lars]

Hi Monty,

I'm still around. It's good to see you're still dropping by.

Cheers mate!

[monty]

As it is to see you are!

Peace:-)

[Erik]

I'm a 37 year old with with what I think is the same deformity (though not as pronounced, I have a picture in my profile you can see). I don't want to go into the story as I've posted here in craniokids now a couple times with no responses. Basically I'm trying to get information regarding an organizations, groups or doctors who help adults with cranial deformities. Do they exist? Based on your post it sounds like they do but I can't find them anywhere online and I've spent a lot of time looking. If you have any information, please help.

[monty]

I'm a 37 year old with with what I think is the same deformity (though not as pronounced, I have a picture in my profile you can see). I don't want to go into the story as I've posted here in craniokids now a couple times with no responses. Basically I'm trying to get information regarding an organizations, groups or doctors who help adults with cranial deformities. Do they exist? Based on your post it sounds like they do but I can't find them anywhere online and I've spent a lot of time looking. If you have any information, please help.

Read http://www.craniokids.org/support/showthread.php?27521-Pubmed-article-showing-adults-who-have-had-surgery!

Lars are you still around? Hope you're keeping well mate!

[Lars]

Hi Monty,


I'm still around but don't stop in as much. The surgery looks interesting.

Cheers

[monty]

No, I don't stop much either these days. Selfishly, I was staying away for my sanity but I realised that it wouldn't hurt me or anyone else to pop in and say hi from time to time. Have a moan and all that lol!

Genuinely glad to hear you are well