My 16 year old daughter has a recently diagnosed tectal plate glioma which cannot be biopsied. She had surgery 7 weeks ago for the Hydrocephalus and they did a Endioscopic Third Ventriscopoly. Everything was going well, recent MRI has shown no growth or enhancement of the tumour, fluid is draining and the ventricles have decreased in size.
The problem is headaches have only recently appeared in the last week, hospital says all the scans and tests are good and they can't explain why or offer any treatment that works, they are not responding to medication at all. Does anyone have any advice at all, I'm desperate
Hi...I am not a medical professional, but I do know a little about Chiari Malformation as I have it and I also know hydrocephalus can cause the cerebral tonsils to herniate....if you have copies of her MRI take a look at them and compare to online Chiari MRI's to see if there is a similar look....if you do not have copies request them from the facility that did the studies ...and going forward always request copies of the MRI's and test results along with the reports.this will make getting a 2nd or 3rd opinion faster and easier.
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