12 year old might need brain surgery worried!

[kathy79]

My 12 year olds health has got worse over the last six months but he has also had complicated issues.
He has been in daily pain on and off day and night with severe head pain in 2 different areas of head. He has suffered fits, vision and balance problems. Different temperature sensations, dizziness , vomiting ,stomach pain, hot flashes and extreme tierdness.
He has been seen by a nuerosurgeon and been given a diagnosis of chiari malformation type 2 with a giant cysterna magna( cyst). We are awaiting another appointment with a nuerologist to see how to proceed and if surgery is the best soloution.
He is taking medication to try and help with symptoms but they are not working or helping.
He is increasingly down and fed up and says dying would be easier than the pain.
Im taking him back to the g.p again to tell themmedication is not working. Within 20 minutes of him moving around he has this awful pain and now all he wants to do is lie still.
Im hoping this appointment at birmingham childrens will hurry up. I hate seeing him like this.

[elizabethsmum]

Sorry for you and ds going through this. Have absolutely no experience to offer but didn't want to read and run. Bumping for you and hoping someone with wiser words will be along shortly. (((Hugs)))