Deaglan's Story (Sagittal)

[punkrawkd0rk]

Deaglan was born May 17, 2007 and from the time he was born me and my husband noticed something weird about his head. I just thought it was shaped funny because of the birth, and because he had a large head so I figured it would go to normal soon enough. My husband was the first one to notice the ridge on his skull and thats when I realized something with up with his head. I googled ridge in skull and came across craniosynostosis. That is where I found all you lovely people and all the information. I took him to his one month appointment and mentioned it to the doctor who suspected it also. They sent me to a neurologist which I knew was the wrong doctor but I had no choice but to go where the doctors referred me since I have medicaid. The Neurologist then referred me to a Neurosurgeon. I finally got to see the Neurosurgeon on august 30, 2007 and he scheduled my sons surgery for September 7, 2007. He did what he called an *Extended Strip* surgery? I have no idea what it is, all I know is he said it will take a while for me to see the difference, so now is the waiting game to see if it actually does work. That is Deaglan's story :) ooh He was also born with bilateral inguinal hernias (which were fixed on July 13, 2007) and he has some fluid on the back of the brain but nothing to worry about :)

[SadieBug07]

Did you have the chocie on the type of surgery they did? Also, since you have medicaid were you able to choose the docter that did the surgery or did you just have to go where you were told?

[punkrawkd0rk]

i couldnt choose, I actually wanted the spring mediated or CVR. There is a doctor right near me (well as far as Duke was anyway) who does the spring mediated but the medicaid chose my dr and he doesn't do that method and he also preferred the extended strip instead of cvr, so thats what he did.....so nope medicaid gave me no choice, i was like a puppet... ;/

[Annie]

Like u, i noticed the ridging and funny shaped head at around one month too, and saw his Doctor who sent us to Neurologist (which i too thought was the wrong Doctor), who then sent us to a Neurosurgeon. Timothy did a CT scan, and his scheduled to have his surgery Sept. 28th.

Everyone who is apart of this support group has said the same thing, it will get better, and the head shape will come back. Sorry to hear though that Medicaid didn't give u a choice!!


Deaglan was born May 17, 2007 and from the time he was born me and my husband noticed something weird about his head. I just thought it was shaped funny because of the birth, and because he had a large head so I figured it would go to normal soon enough. My husband was the first one to notice the ridge on his skull and thats when I realized something with up with his head. I googled ridge in skull and came across craniosynostosis. That is where I found all you lovely people and all the information. I took him to his one month appointment and mentioned it to the doctor who suspected it also. They sent me to a neurologist which I knew was the wrong doctor but I had no choice but to go where the doctors referred me since I have medicaid. The Neurologist then referred me to a Neurosurgeon. I finally got to see the Neurosurgeon on august 30, 2007 and he scheduled my sons surgery for September 7, 2007. He did what he called an *Extended Strip* surgery? I have no idea what it is, all I know is he said it will take a while for me to see the difference, so now is the waiting game to see if it actually does work. That is Deaglan's story :) ooh He was also born with bilateral inguinal hernias (which were fixed on July 13, 2007) and he has some fluid on the back of the brain but nothing to worry about :)