Hi. Your niece needs to be under the care of a Neurologist and a Ophthalmologist. If its possible, also a Neuro Ophthalmologist.
These drs usually work as a team, the neuro to take care of the brain and the extra csf, the Ophth to look after her eyes.
If she is having vision problems, she could have paps, Papilloedema, swollen optic nerves. This is caused by the extra pressure from the csf pushing on the optic nerves.
Have they started her on medication yet? Diamox or Topamax.
Try not to worry too much. People who end up losing their sight are the ones who didnt take care of them selves. Left untreated, you can loss your eye sight but it very seldom happens when you are under the care of the specialist.
I have IIH or PTC as it is known as well, for two years. I also have a VP shunt. If I can help, drop me a line. Good luck, Cath278
2010-Oct 20 My niece was just diagnosed yesterday with IIH, Idiopathic Intracranial Hypertension, pseudo tumor cerebri. Her vision is getting very bad at times & she was told that she could go blind. It was strongly recommended that her eyes be treated before they put a stint into her brain to drain the fluid so she won't lose her vision. Doctors are checking her eyes every 3 weeks. She lives in Michigan outside of Detroit. Time is short with her condition progessively getting worse. Having gone online, we are unable to locate an eye doctor specialist that knows how to treat IIH patients. If you have any recommendations you can post on this site for us, please let us know. Thanks
You need the spinal tap. They have to determine the pressure on you brain. Untreated this could result in serious problems including blindness.
Dr. O.