Originally Posted by warga

My daughter had an AVM bleed at the age of 15. She had hydrocephalus then, but because of issues of having acquired a pseudomonas infection in the brain at the time and she had to have the avm removed, we were leary of an additional shunt insertion. She was able to tolerate not being shunted until 2009 where she did not have any headaches, no nausea or issues prior. When she was 21, she developed a fine tremor and vague symptoms which prompted me to bring her to emergency. They found enlarged ventricles and shunted her with a medium flow shunt. That's when the nightmare of all kinds of issues began. Her eyes rotated non stop, her left cranial nerves were affected, her headaches were so severe that she was screaming in pain if she was elevated, and were only slightly decreased when lowered to a laying position. Then a programmable shunt was put in, with more relief of her symptoms. Another shunt was also put in to rescue the left cranial nerves ( she had a non communicating cyst where the AVM had been which got larger as the other shunt drained)
Well, things got better, but she still has many issues. She actually was better before she was shunted. When we want the shunt adjusted , we need to check with the neurosurgeon, who is reluctant to adjust. So my daughter has headaches, worse when standing, tremors , also worse when standing , and balance issues. I wish she could be as she was before she was shunted. But, I know that she needs to have a shunt. I believe it is flow issues that need fine tuning, but the neurosurgeon is reluctant and not willing to spend the time. Is there a neurosurgeon out there for adults who will? We are from Canada, but will travel to find some answers.