Unsolvable personality changes due to broken valve

[Jillbrown123]

Anyone experience lethargy, gagging, personality changes, confusion after a shunt revision or valve change? IVIG and steroids make my daughter normal again but they won’t replace her shunt and I know this is cause. Something about it is not right and it’s been a year since surgery. She fluctuates. One week she can attend school the next week she can’t find her classroom. She is a senior. Surgeons keep saying her brain isn’t sagging and she doesn’t get better laying down do it cannot be the shunt. That’s not true I know it’s the shunt. This all vegan immediately after surgery and there’s no antibodies in her CSF...need to find a surgeon in mpls that will listen to me.

[lcd8]

So sorry to hear about your daughter Jill. I have a shunt and have had several revisions over the years. But apart from the lethargy (a normal sign the brain is trying to heal) I haven' t experienced the symptoms you mention. Its awful when you know something is wrong and the medics won't do anything about it though. Before my shunt I used to get massive and very painful headaches the docs said were migraine. It is thanks to my Mum who wouldn't take no for an answer that I was eventually sent for a CT scan and they saw the blockage of CSF for themselves. Good luck with finding a surgeon. Afraid I'm in the UK so can't do this.