I feel alone

[HSPcranio]

I feel really alone.

Why is there so little help for adults with skull deformities?
Or do i just have bad luck in my search?

The face is the most representative part of your body.
Having it deformed is painful.
Mild, moderate or severe, it sucks.
Especially increased assymmetry sucks.
Having some deformity in itself wouldnt bother me that much.
It bothers me that i have it AND that i dont like the look.
The last part forms the problem.
My family doctor thinks i have occipital plagiocephaly (i feel like that is not all there is to it, due to hardened dents and other stuff).

Boobjobs, earjobs nosejobs, anti aging surgery, fat removal, you name it, no problem, they all get done for loads of people. There are even people who let their face get shaped into animals (with tatoo's on top) or implant devil type of horns on their head. There are programs on television, where people get all kinds of implants, including facial implants.

Problem with the profile of your head + you are just a random joe?
Bad luck dude, you gotta accept it (my experience so far).
I went to a surgeon to ask about what kind of options i have.
The whole sit at that appointment, was over within 5 minutes and the summary is more or less ''accept it''.
I expected scanns and the likes, but nothing like that happened.

I dont feel like it is cosmetic.
Personally, my neck, back and other things, are prolly affected by it as well (posture for example).
I feel increased pressure on my skull and than there is the emotional problems that come with it.

As a baby i couldnt speak yet, so I couldnt say ''hey docs, something is wrong with the skull, do something!''.
I couldnt talk when i had a bad locomotion as a baby (and still nowadays), so i couldnt say ''put me in baby/kid physiotherapy sessions''.

My condition is not severe, but it still sucks.
I dont like the look and i have that opinion for a good reason. .
The parts of my head that are close to unaffected look good and reflect who i am.
The parts that are affected look bad imo and dont relfect who i am and how i feel, that i should look.

Over the years , i have suffered from hairloss.
Without the hair covering it up, it will be more noticeable and i dont like that obviously.

I would like surgery.
For example, some implant or filling sprayed under the skin, at parts of my head that need more filling/rounding.
If possible, some way of physiotherapy for my back and neck.
I dont have a straight posture and i have a bad locomotion (is that the correct way of saying it?).
If i had those changes, it would still be noticeable, but it would look fairly okay, unless the skin would stretch to far ofcourse.

If i had a nice woman in my life and others things going fine in life, than it wouldnt really be all that bad (compensation)
I think i would be able to deal with it in that case. However that is all lacking as well.

Always did my best to be a good person and do good in life.
I am good at heart and intelligent, but almost everything else in life is a mess (no exaggaration) for quite some years now
and that sucks as well.

I dont want to complain(I probably sound like a complainer right now though xD), but i just feel bad.
I guess i keep looking for some ways to make things better, but so far i cant find them.
Atm, there is this huge questionmark around the whole skull subject.
I dont know if i have options or not, because of not knowing the options, i cant find closure

[cheryl2]

Sorry you are feeling so down. Yes it is true that people judge you by their appearance. It can make life hard. I don't have cranio but I do have a lazy eye and people have said hurtful things about it. But this does not have to ruin your life You sound like you could be seriously depressed. Perhaps you could get help from a therapist to deal with all this. Take care.

[JOFFLE]

Heh Hsp,
I like to hear your point of view on all these medical advancements. I have scaphocephelic craniosyniotosis (pardon the spelling) and have heard the same crap from doctors. "What you need is self confidence." Well they can keep 80 year old men erect but they want me to get confidence. I saw on the tv they can actually make short men taller buy breaking there bones and stretching them out. Maybe when they stop pursuing the vanity of men they can slow down and fix people like you or me. That would have been horrible being born short. Granted I have seen some beautiful things happen with the children on here I just wish there were answers for me. Also I am tired of minority groups crying all the time. Where is the voice for the disabled. People in wheel chairs. The mentally handicapped. People cry prejudice when there are a thousand people who look like them or have the same lifestyle as them. My local paper rarely talks about issues that have to do with handicapped people. Its all race and sex. Anyway I apologize if this comes off strong. I've been called an alien, egghead, football head, elephant man, hunchback of notre dame, etc just to name a few. Where are my rights....hahaha. Anyway HSp you are not alone. Hopefully you can find some answers on here. I thought I saw someone talking about doctors putting a solid compound on the skull to "round" the head. Maybe that would be an option for you. -joffle

[HSPcranio]

@ Joffle

The ''What you need is self confidence'' comment that you had from doctors:
It gives me the impression, that those doctors have lack of sympathy and understanding.

You get self confidence, when you are in a position, to develop yourself to at least your minimal liking.
If you like who you are and you are not afraid to show it (in fear of what others might say or think), than you can show self confidence.
You can show it, because you stand behind it yourself(the most important part). It is good enough according to yourself.
If you cant change something to your minimal liking, than it becomes complicated. How are you gonna stand behind it?

What is needed is acceptance of things you cant change, or you need help to change them to your minimal liking (maybe i should say, minimal need or standard).
How far can you lower your standard? There are loads of people that are short, its not really abnormal, so its probably easier in general, to lower your standard to ''short is okay'' and find acceptance, than it is to lower it to''skull deformity is okay''. You could also try to find some way to compensate in other areas and find confidence through that.

You cant just jump to the ''show self confidence part'' out of nowhere.
Those Doctors should know better.

Personally, i am failing at lowering my standard and finding compensation xD.

About the medical advancements:
I am not exactly sure which ones you meant.
The 80 year old man remaining erect and stuff like boobjobs and such and the breaking bones and stretching them out?
I am no expert at medical advancements. I just get, maybe annoyed, by how people can change all kinds of normal features about themselfs with surgery and all those kind of sugeries like boobjobs, get widely promoted everywhere, yet when you have a true need, it is super hard to find help or information(or cant find any at all).
If a woman turns her Bcup in Double D, i dont consider that a true need. An implant, for a woman, after breastcancer however, would be considered a need imo.
But like i said, i am no expert at what inventions and advancements they make in the medical field.
If you were lucky that your doctors and/or parents, took care of your skull issue as a baby, than enough advancements have been made in that medical field, to treat you. They do make advancements in that field, but it is just lacking for adults. It would be nice if adults would get more attention.


the solid compound:
I went to surgeon and suggested injections under the skin(for rounding) or other type of implants.
The arguments he used to not follow that route, where possible skin infection and stuff like ''you have hair that covers it''.
I dont think he would have gone for the solid compound, but ty for the tip anyway.

@Cheryl2

Sorry to hear that people say hurtful things about your eye.

About the depressed thing:
I havent lost touch with reality and i have desires.
I can see the positive, but i am not blind for the negative either. I did go through the process of thinking like ''okay, not happy with the skull, but i can look at other area's of life to compensate''.
Sadly enough, it isnt going okay either in those areas. If you do your very best with lack of results and lack of support, for continues years, you arent gonna sound like a happy person :).
I have experienced quite a lot in my life, (lots not skull related at all). I feel worn out.
Not gonna write down the story of my life in detail here though, but maybe this explains to you a bit why i feel how i feel.
Thats why i am back to the skull subject again :), to see if i can get something done in that area.

[Ryan S.]

@ Joffle

The ''What you need is self confidence'' comment that you had from doctors:
It gives me the impression, that those doctors have lack of sympathy and understanding.

You get self confidence, when you are in a position, to develop yourself to at least your minimal liking.
If you like who you are and you are not afraid to show it (in fear of what others might say or think), than you can show self confidence.
You can show it, because you stand behind it yourself(the most important part). It is good enough according to yourself.
If you cant change something to your minimal liking, than it becomes complicated. How are you gonna stand behind it?

What is needed is acceptance of things you cant change, or you need help to change them to your minimal liking (maybe i should say, minimal need or standard).
How far can you lower your standard? There are loads of people that are short, its not really abnormal, so its probably easier in general, to lower your standard to ''short is okay'' and find acceptance, than it is to lower it to''skull deformity is okay''. You could also try to find some way to compensate in other areas and find confidence through that.

You cant just jump to the ''show self confidence part'' out of nowhere.
Those Doctors should know better.

Personally, i am failing at lowering my standard and finding compensation xD.

About the medical advancements:
I am not exactly sure which ones you meant.
The 80 year old man remaining erect and stuff like boobjobs and such and the breaking bones and stretching them out?
I am no expert at medical advancements. I just get, maybe annoyed, by how people can change all kinds of normal features about themselfs with surgery and all those kind of sugeries like boobjobs, get widely promoted everywhere, yet when you have a true need, it is super hard to find help or information(or cant find any at all).
If a woman turns her Bcup in Double D, i dont consider that a true need. An implant, for a woman, after breastcancer however, would be considered a need imo.
But like i said, i am no expert at what inventions and advancements they make in the medical field.
If you were lucky that your doctors and/or parents, took care of your skull issue as a baby, than enough advancements have been made in that medical field, to treat you. They do make advancements in that field, but it is just lacking for adults. It would be nice if adults would get more attention.


the solid compound:
I went to surgeon and suggested injections under the skin(for rounding) or other type of implants.
The arguments he used to not follow that route, where possible skin infection and stuff like ''you have hair that covers it''.
I dont think he would have gone for the solid compound, but ty for the tip anyway.

@Cheryl2

Sorry to hear that people say hurtful things about your eye.

About the depressed thing:
I havent lost touch with reality and i have desires.
I can see the positive, but i am not blind for the negative either. I did go through the process of thinking like ''okay, not happy with the skull, but i can look at other area's of life to compensate''.
Sadly enough, it isnt going okay either in those areas. If you do your very best with lack of results and lack of support, for continues years, you arent gonna sound like a happy person :).
I have experienced quite a lot in my life, (lots not skull related at all). I feel worn out.
Not gonna write down the story of my life in detail here though, but maybe this explains to you a bit why i feel how i feel.
Thats why i am back to the skull subject again :), to see if i can get something done in that area.


Hey HSP,
I sent you a few PM. The more I read about you the more I see how much we have in common. Just as a reminder for those who dont know I did have surgery but none the less it is still noticeable that I have cranio.

I have a lot of feelings/thoughts on the confidence issues. I will say as I have become older I have been able to take care of that a lot better.

One thing that has really helped me Is wrking out pretty hard. Im not super tall 5'11 but I am pretty strong. Itll sound weird but I feel as though the wrking out has kind of evened me out a bit. Putting aside the visual thing though wrking out also does wonders for you mentally too though.

Id also suggest talking about your cranio more and more. I still havent been able to get to the level id like in regards to my openness on the subject but I am really trying too. Sometimes I still revert to just wanting to forget about it but then I realize Itd be more helpful to help others who are going down a similar path as I have and will continue to go.

To everyone; Feel free to email me at ryandauer962@gmail.com. I check that every day and will respond ASAP when I receive messages.

Best,
Ryan

[Ryan S.]

In regards to drs not wanting to do the surgeries; At the end of the day I really think this just comes down to drs not wanting the liability/lawsuit risks.

Surgeons like to cut things so if it wasnt such a risk they would do it imo. Anything regarding the head is rather risky, especially when you start cutting into the skull. Drs/Insurance companies are ever vigilant for what the consider unnecessary risk.

I always approach my Docs from the point of view that if things go wrong Im not going to put it on them. Misstakes happen, and if it is a true accident careers should not be ruined, So I def see the pov of some drs.

No matter what though we need docs/insurance companies who are willing to tackle this issue.

[JOFFLE]

Heh Hsp,
I was just reading your thoughts again on over compensating with other areas of life because you are not happy with your head. I just wanted to say I think I can relate. Growing up I was very competetive(in sports and activities that I could play not requiring a helmet.) The thing in the last few years that has bothered me is I feel I lost my competitive edge or my desire to "compensate" if you will. I just feel worn down. There have been times I have had enough good things going on around me and enough good people around me that it made me forget about my appearance. Lately with lacking drive and continual anxiety about hairloss I have been more caught up with my appearance. I hope I can find a fix for at least one problem. Anyway I feel like I am complaining so I'll stop now. I really hope things are going well for you. If you ever need to talk shoot me a message. -joffle

[CdnGirl]

Hello, I'm new here. I'm a 46 year old female, self diagnosed, no surgery. I stumbled upon this site. I could have written a lot of these posts myself. Lots to absorb, will write more later. But to the OP you're not alone.

[Ryan S.]

But to the OP you're not alone. Yep. Very true.

[jochi]

have you been diagnosed with anything in relation to your skull? you should try contacting the The Jorge Posada Foundation, who provides provides families and children affected by Craniosynostosis with emotional support and financial assistance

[jochi]

how old were you when you had surgery?

[jochi]

You can't ''self dianose'' yourself, I see you are in Canada as well, here is a craniofacial, and neurosurgeon doctor that may be able to help you; Dr. Antonyshyn, Ml-520
Sunnybrook Health Sciences Centre
2075 Bayview Ave
Toronto, ON Canada
M4N 3M5

[monty]

Hello everyone I'm Monty

I read through your posts and you all sound so similar to me. I totally understand everything you are going through. I haven't been here for a while cos I was getting more depressed thinking about this condition than just blanking it out.

I went down the route of having major surgery to correct it in adulthood but to no avail. Now, I am looking into more minor correction. Like hair transplants, hair line lowering, burring away of bone etc etc. Please feel free to PM me if you have any questions or advice.

Peace

[Erik]

Just wanted to say that I've been what your going through, hang in there. I too have been looking for help online without much success. I feel if there was an organization or a group for adults we could help each other. It's such a lonely problem to have because we spend most of our effort hiding it from others and suffering when we cannot. I think if we could talk to each other somewhere it would help a lot. I feel like there is a lot of us out there getting the run around and because we have no unified voice we have little hope of people listening to us.

All of that said, if any of you know of any groups, organizations, etc. for adults with mild (but noticeable) craniosynostosis that I could contact, I would appreciate it.

[craniomommynbaby]

Hi!
I want to add that you are not alone. I am curious, though, as to what sort of doctor you saw? At one visit with my son's surgeons, we got to talking about my head, and one of the surgeons started to look at me and analyze what all he could "fix" if I so desired. He was a pediatric neurosurgeon, but he was still willing to look at me and even operate on me if I wanted. I am not sure if the results would be exactly what I would want, but it left me thinking that options may exist for us adults?