Discussions By Condition: I cannot get a diagnosis.

Help- anyone know about pseudotumor cerebri?

Posted In: I cannot get a diagnosis. 3 Replies
  • Posted By: tgrasty
  • March 18, 2009
  • 05:41 PM

About 4 to 5 weeks ago my 14 yr old daughter began complaining of a minor headache. She suffered a fainting spell. 2 & 1/2 weeks ago the headache became severe & she began throwing up. She was hospitalized for 8 nights. We never got a good diagnosis- she had 2 spinal taps which showed white blood cells in spinal fluid so aseptic meningitis was diagnosed. However, the cause of the infection or inflammation can not be found. She was home a day & half and was readmitted to the hospital and diagnosed with pseudotumor cerebri & put on Diamox. She had a third spinal tap- which still has high white blood cells in fluid. We were released again 2 days ago. The headache has come back along with blurred vision in one eye. We can't seem to get over 2 to 3 days relief after a spinal tap. Has anyone got any experience with pseudotumor cerebri? Has anyone got any other thoughts on the source of white blood cells? We were told if the source for that could be found and treated that we may be able to get relief from the extra fluid buildup.

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3 Replies:

  • My sister suffers pseudotumor cerebri- which basically means the brain fluid builds up faster then it can drain. Pressure in the head causes headaches because it fills the ventricles and any other space it can find. My sister was put on topomax and eventually had a shunt placed. She is now doing alot better with her headaches and pain. Her eyes returned to normal vision. They never told her the cause, but she was also told she had a prior infection. Maybe sinus, or menegitis, it's a mystery when it comes to the brain. White blood cells appear when there is an infection, its just a matter of finding out if it is a bacteria (which requires antibiotics), fungus (antifungals) or a virus (unfortunately you have to wait this one out). Good luck & hope she feels better.;)
    Carrlexzi 36 Replies Flag this Response
  • How long has your sister had this? Also, can you tell me how long she went before they decided to place a shunt? How long has she had a shunt?
    tgrasty 1 Replies Flag this Response
  • My sister was diagnosed in the late 90's. She had her first shunt placed around 2001. I would say a year or so after the diagnosis. Then she had a revision 3 years ago.
    Carrlexzi 36 Replies Flag this Response
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