Adult with possible craniosynostosis

[jochi]

Hello guys, i'm new to the site. i had came across the craniokids.org and seen the posts of people with children that had or have craniosynostosis, letting me know i'm not alone . I'm 25 year old male and I suspect that I have some mild form of craniosynostosis. The fact that this has gone unnoticed for the last 25 years of my life I suppose speaks to the relatively mild nature of my condition. I have only become aware of this as my hairline has 'matured'. I wanted to know would you happen to know any doctors that performs successful corrective surgery for adults with craniosynostosis,and if so would anyone know of any doctors? and first off how do i go about to get diagnosed. please and thank you

[cheryl2]

Welcome jochi,

Where are you located? What you may want to do to start is take a look at this list: http://craniokids.org/support/showthread.php?t=7. Hopefully you can find a surgeon in your area from there. Others may know of additional surgeons not on that list.

A craniofacial surgeon will be able to diagnose you and give you treatment options. Good luck!

[fitmomof2ae]

Welcome to ck!

[Annie]

Hi Jochi, welcome to CK kids. I don't know of any doctors right now, but what you could do is go to your doctor and ask them to refer you to a Neuro Surgeon or a doctor who has experience with Craniosynostosis. They would have to run test, CT scan etc, to make a diagnosis and also tell you if it is mild or sever and which suture/s are closed. Start there and keep us posted on what happens. You could also call NYU Lagone Medical Centre in NY or the World Cranio Foundation In Dallas Texas, they should be able to assist with the name of a doctor/s who could help. Good luck with everything and keep us posted.

[jochi]

Thank you guys for warm welcome. and info. look forward to keeping you updated and hearing from you. take care.

[line]

Welcome to ck and Good luck : )

[monty]

Hi and welcome to you. Like the above poster says, best to go and see your doc and get a referal from there.

Good luck

[jochi]

Hi guys I am currently booked to see my family Doctor this following Monday, to ask for a referal to go and see a Neuro Surgeon or a doctor who has experience with Craniosynostosis to determine if I may have saggital Craniosynostosis. I'm a bit nervous, and don't know how should I explain the dynamic of wanting to see a neuro Surgeon to my family doctor, she can be a bit of a hardball. I have been going to this doctor all my life, and not ever once I expressed the concerns of my head to her, but did express some of my low self esteem. I don't want to get into a dispute match with my family doctor, I'm afriad she will question me with numerous of questions, but I know at the end of the day she needs to know. I know there is a strong possibility I will hear ''oh you are fine, there is nothing wrong with your head''. Can anyone give me some advice on how to approach this uncomfortable matter I might have with my family doctor. I have contacted a Craniofacial surgeon by the name of Dr. Oleh Antonyshyn. Who is Plastic/Craniofacial Surgeon that works out of Sunnybrook Health Sciences Centre. I will need to get a referral from my Family Doctor before an appointment can be booked.

[Janet]

I'm glad you are getting the ball rolling. Don't let your family doctor dismiss your concerns. I really hope you get into Sunnybrook soon, it's an amazing hospital. Please keep us updated.

[jochi]

Thank you for the encouragement. I will not let my family doctor dismiss my concerns.

[Dawkins]

I had to talk to 3 different doctors before one of them finally understood my problem, so yeah, just keep at it or ask to see someone else if she doesn't understand.

[Lee]

Jochi
Your 25 and are just becoming aware there may be an issue? You suspect a mild case? If it hasn't been an issue for 25 years why on earth would you consider surgery now? This isn't a nose job we're talking about here. It's a serious possibly life threatening procedure. There are possible complications. Many of which parents of young children are never really aware of as they don't know how their children would have fared without the surgery. But we know that you're an intelligent basically "normal" looking young man. Why mess with success? Seriously if you want to know if you have cranio.. fine... go to a specialist.. get a scan done but then what? The only thing it will buy you is knowledge which may send you on a path for genetic counseling when you're thinking of starting a family of your own. Just a little food for thought. I'd hate to have you do something rash if it isn't necessary. Please remember you're 25 .. don't rush.

[Ryan S.]

Hi guys I am currently booked to see my family Doctor this following Monday, to ask for a referal to go and see a Neuro Surgeon or a doctor who has experience with Craniosynostosis to determine if I may have saggital Craniosynostosis. I'm a bit nervous, and don't know how should I explain the dynamic of wanting to see a neuro Surgeon to my family doctor, she can be a bit of a hardball. I have been going to this doctor all my life, and not ever once I expressed the concerns of my head to her, but did express some of my low self esteem. I don't want to get into a dispute match with my family doctor, I'm afriad she will question me with numerous of questions, but I know at the end of the day she needs to know. I know there is a strong possibility I will hear ''oh you are fine, there is nothing wrong with your head''. Can anyone give me some advice on how to approach this uncomfortable matter I might have with my family doctor. I have contacted a Craniofacial surgeon by the name of Dr. Oleh Antonyshyn. Who is Plastic/Craniofacial Surgeon that works out of Sunnybrook Health Sciences Centre. I will need to get a referral from my Family Doctor before an appointment can be booked.
Hello Jochi. Just remember the Doctor works for you not the other way around. If you feel there is an issue than there is an issue, no one knows you better than your self.

Do you feel the self esteem is related to the possible Cranio?