My daughter is 17 she had a pineal brain tumor removed in Dec,2007 she did good. She continues to have headaches, dizziness, blurred & double vision and nausea. All of her MRI and CT's all show good. Her LP shows high presure.The doctor said she has Pseudotumor. I wanted to find out if anyone has any info about this.
Hi, I know this must be very frustrating for u and ur daughter....below I have the link to the info I copied and pasted.Pseudotumor is closley related to chiari malformation in that the pseudotumor can cause chiari to develope....it can also cause a syrinx to form as well.I am the CL on the chiari forum here on MedHelp and invite u to join our forum.
Pseudotumor cerebri literally means "false brain tumor." It is likely due to high pressure within the skull caused by the buildup or poor absorption of cerebrospinal fluid (CSF). The disorder is most common in women between the ages of 20 and 50. Symptoms of pseudotumor cerebri, which include headache, nausea, vomiting, and pulsating sounds within the head, closely mimic symptoms of large brain tumors.
Is there any treatment?
Obesity, other treatable diseases, and some medications can cause raised intracranial pressure and symptoms of pseudotumor cerebri. A thorough medical history and physical examination is needed to evaluate these factors. If a diagnosis of pseudotumor cerebri is confirmed, close, repeated ophthalmologic exams are required to monitor any changes in vision. Drugs may be used to reduce fluid buildup and to relieve pressure. Weight loss and cessation of certain drugs (including oral contraceptives, tetracycline, and a variety of steroids) may lead to improvement. Surgery may be needed to remove pressure on the optic nerve. Therapeutic shunting, which involves surgically inserting a tube to drain CSF from the lower spine into the abdominal cavity, may be needed to remove excess CSF and relieve CSF pressure.
What is the prognosis?
The disorder may cause progressive, permanent visual loss in some patients. In some cases, pseudotumor cerebri recurs.
What research is being done?
The NINDS conducts and supports research on disorders of the brain and nervous system, including pseudotumor cerebri. This research focuses primarily on increasing scientific understanding of these disorders and finding ways to prevent, treat, and cure them.
NIH Patient Recruitment for Pseudotumor Cerebri Clinical Trials
At NIH Clinical Center
Throughout the U.S. and Worldwide
Intracranial Hypertension Research Foundation
6517 Buena Vista Drive
Vancouver, WA 98661
National Organization for Rare Disorders (NORD)
P.O. Box 1968
(55 Kenosia Avenue)
Danbury, CT 06813-1968
Tel: 203-744-0100 Voice Mail 800-999-NORD (6673)
My 14-year-old son has pseudotumor (3 1/2 years), which is also call Benign or Idiopathic Intracranial Hypertension. I had him registered with the Intracranial Hypertension Research Foundation. They are very helpful with info on this condition and have a wonderful website. Hope you check it out and get your daughter registered.
It's been a long road for us. If there's anything I can help with, let me know.
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