19 years old and untreated

[marvinb]

Hi, I'm 19 years old and I was born with Scaphocephaly. I was never treated as a child but I was wondering if there are any treatments for it at my age.

Thanks.

[fitmomof2ae]

Welcome to ck Marvin! There are several other adults who are looking into surgical options. I'm sure they'll send you a note soon. We've actually had several untreated cranio adults on the forums recently.

My son was born with sagittal as well. He had surgery at 11 months. I worry about how he looks all the time. I worry if his head hurts, etc...It's nice to hear stories from other's who have had sagittal and are older.

We'd love to learn more about you if you'd like to share...For example, did your cranio ever cause any issues...vision, sinus, headaches, seizures, teasing? When were you diagnosed? When did you find out about your cranio? Did your parents consider surgery or did they not know about surgery?

We'd love to see pics too! Thanks for sharing your information! I hope you can get the answers you are searching for soon...Why are your thinking about treatments now? Just wondering...

[BrendansMummy]

Welcome to CK ! There are a few untreated adults here and i am sure they will chime in soon.

Again, Welcome :hugg

[monty]

Hi, I'm 19 years old and I was born with Scaphocephaly. I was never treated as a child but I was wondering if there are any treatments for it at my age.

Thanks.

Hi Marvin

In short there are treatments available. Its more a case of whether you can get treatment. Im looking into it myself. It's looking like a possibility though the cynic in me feels its all gonna go to shit but im pressing on regardless.

I have a thread in the welcome matt. untreated cranio adult if you wanna take a look at how its effected me.

I am interested in how you are and how you feel it has effected you too if would be kind enough to share.



Many thanks

[marvinb]

Thanks for the welcome, but i just want to say its nice that there are forums for this. Anyways, the only issue it seems i really have from sagital is my eye site. They are pretty bad but nothing my contacts can't fix. Also, about headaches, I really never get headaches. If i do they are only mild and go away shortly. I've never had seizures.
I kinda diagnosed my self with sagittal synostosis. I found another forum after searching for some answers and found out about cranio. I looked through and saw the affects of Scapho and realized that i had the same affects. (http://www.craniokids.org/support/forumdisplay.php?f=11)My parents never really knew much about my condition and we never talked about it. Its hard for me to bring up to them and talk about it. But I asked my mom yesterday about it if she knew what it was called and she said she didn't know there was a name..... But she told be they didn't have surgery because something wasn't expanding in my head and there wasn't pressure, but sorry for my lack of knowledge on this. I don't think she knew there was corrective surgery.

[monty]

Thanks for the info. No worries about knowing little about it, I dont myself!

Got some news today re my situation, will put it in my thread. I am being given the option of surgery.

easy

[evergreenmom]

Marvin-

You would want to find a craniofacial surgeon with experience treating young adults. You should definitely involve your parents in any discussion about this as surgery is pretty serious but it is worth looking in to so that you know all the details. We can help you find a surgeon if you want. My sons doctor has a really informative website- check it out at... http://www.thecraniofacialcenter.org/index.html

Good luck and let us know as you move forward...

[fitmomof2ae]

Marvin - Thanks for the update and additional info. I wish you the best.

Monty - I'm on my way to check out your thread.

[marvinb]

Monty- That's great, its nice to know there's hope to get this fixed and good luck.

evergreenmom- yes i am talking to my mom now about finding a surgeon. It was just hard to bring up the first time and talk about it since we have never before.But thanks for the link, I'm going to check it out.

There's so many helpful people on this site :)

[charliesmummy]

Hi Marvin i just wanted to add my welcome & to say im so pleased you have found us.
Im glad you've met 'Monty' he's been a fantastic help to untreated cranio adults & fingers crossed for him will be getting surgery soon so keep pushing to get the results you want & dont forget to keep us informed.
If you'd fancy puting some pics up we would be more than happy to give you our non-professional opinions x