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Cranio synostosis

(4 Posts)
lillajag Wed 21-Jan-15 15:34:35


My little boy (nearly 7 months) have recently been diagnosed with sagittal synostosis and will have surgery shortly...

I'm looking for advise from someone who's been in this situation about what I can expect regarding surgery/recovering/staying at hospital etc?

It's starting to get a bit more real now when we're getting closer to surgery...

Cephaly Thu 22-Jan-15 10:45:58

Message withdrawn at poster's request.

strawberrypenguin Thu 29-Jan-15 17:32:48

Hi lilla my DS has/had sagittal and was operated on by the fab team at John Radcliffe. I have a very sporadically updated blog about our experiences in the MN bloggers network. It's Blogforbilly although I do warn you that it has post op photos on there. We go back for our two year post op check in a couple of months and DS is a brilliant fun boy with no problems resulting from the Cranio. I second looking at headlines although a lot of their help is geared towards those with syndromes the facebook group is a friendly place with lots of experience. Do feel free to PM or ask questions on this thread, if I can answer your question I will.

strawberrypenguin Thu 29-Jan-15 19:18:29

Sorry was replying at work! To try and answer some of your questions - the recovery time is amazing, there is a lot to be said for not knowing your supposed to be feeling sorry for yourself! We were in hospital for 4 days including the day before the op for the pr- op tests. Which hospital are you at? They all have slightly different ways of doing things.
My boy had a subtotal Cranial vault remodel ( they didn't touch his forehead)at JR. So I'll be more ise if your there too!

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