Chiari Online Support Group

My Grandsons Story

My 9 year old grandson Charlie was diagnosed with chiari a couple of years ago after being diagnosed with a syrinx he had decompression surgery three weeks ago since then he has been back in hospital twice with very bad headaches the last time he had a lumbar puncture to relieve the pressure which was apparently very high within a few hours the pressure was building up again the surgeons have now decided to put in a shunt he is to have this done tomorrow i am so worried as this operation seems to not have a very good sucess rate and could have complications also putting him through another major surgery so soon wondering has anyone experience of having these operations so close together

Hello, Diane

We’re really glad that you found us, and we hope that you will be too. Of course you need support, and your Charlie is lucky to have a grandma who is in his corner, and asking questions.

I don’t know the answer to your question, but I’m pretty sure someone here does. It may take some time before someone pops up with information, but please be patient. Another thing could do in the meanwhile, is use the search feature (magnifying glass above) to see what you can find out about on your own.

Let us know if we can help with your search!

Seenie

Thank you for the reply Charlie had his shunt operation on Monday 12th feb he came home from hospital the next day all seems to have gone well just keeping our fingers crossed now by the way I am based in the UK don’t know if you have any more members over here

Oh yes, there are others here in the UK. If you post with the subject line “Who here is in the UK?” or something like that, they’ll most likely come out of the woodwork.