craniostenosis grew back [Archive]

danielsmum

03-24-2006, 05:36 AM

Daniel had his first cranioectomy at 5 months of age and then again at nine months of age which was then found tohave hydrocephalus as well ,has anybody else had to go through more than one surgery due to the skull growing back , Daniel was born with severe saggital craniostenosis and is now 5 and a half years old and the growth has slowed down for now , has been tested for everything syndrome wise and not one showed up ......danielsmum:wink

Katie

03-24-2006, 08:01 AM

:hugg We were told from the start Dillon would most likely need more than one surgery, the second being for reconstruction. He has another CT scan next Friday and hopefully we get a better idea of when that will be. His face is begining to show asymmetry again, hopefully it's normal shifting.

We'd love to see some pics of little Daniel!

plukids

03-24-2006, 03:41 PM

Hi Danielsmum! I do not have personal experience with multiple surgeries, but would like to offer ((HUGS)) to you! I know there are mom's out there that have had multiple surgery kiddos! I hope you find the answers you are looking for.

snickers9246

03-25-2006, 12:31 PM

We're hoping we won't have to have another for re-growth, but we may have to have another as Holly's large soft spot isn't filling in. :( I an't imagine going through more surgeries. I hope your little guy will be okay and not require another, but if so, we're here for you.

Gwen

03-30-2006, 03:23 PM

Daniel had his first cranioectomy at 5 months of age and then again at nine months of age which was then found tohave hydrocephalus as well ,has anybody else had to go through more than one surgery due to the skull growing back , Daniel was born with severe saggital craniostenosis and is now 5 and a half years old and the growth has slowed down for now , has been tested for everything syndrome wise and not one showed up ......danielsmum:wink

Hi Daniels mum-My twin boys both had surgery on Dec. 12 05 for sagittal synostosis. My twins will 12mths. in April. One of the twins may need a second operation. What information can you tell me about a second surgery? What is hydrocephalus?