Pseudotumor Cerebri 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. 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 through dieting or weight loss surgery 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. The disorder may cause progressive, permanent visual loss in some patients. In some cases, pseudotumor cerebri recurs. 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. http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?CMD=search&term=pseudotumor+cerebri+AND+human[mh]+AND+english[la]&db=PubMed&orig_db=PubMed&filters=on&pmfilter_EDatLimit=5+Years 1 http://clinicaltrials.gov/ct2/results?term= /disorders/pseudotumorcerebri/pubs_pseudotumorcerebri.htm /disorders/pseudotumorcerebri/xml_pseudotumorcerebri.htm /unknownpath/xml_pseudotumorcerebri.htm Benign Intracranial HypertensionIntracranial Hypertension V781 Intracranial Hypertension Research Foundation
6517 Buena Vista Drive
Vancouver WA 98661 contact@ihrfoundation.org http://www.IHRFoundation.org 360-693-4473 360-694-7062 International non-profit that sponsors and funds medical research of idiopathic intracranial hypertension (old name pseudotumor cerebri) and secondary intracranial hypertension. IHRF's mission is to understand why IH happens, and find better treatments while ultimately seeking a cure. IHRF provides a support system, educational resources including patient conferences, and communication tools for patients. For physicians and scientists, IHRF sponsors educational training opportunities. IHRF operates in the IH Registry, a patient database for clinical research, at the Oregon Health & Science University. National 501(c)(3) tax-exempt organizations offer a comprehensive program of information and support services for patients and their families. They may offer patient and professional information and education materials, sponsor meetings and scientific workshops, fund research, and provide referrals to chapters and support groups.
V91 National Organization for Rare Disorders (NORD)
55 Kenosia Avenue
Danbury CT 06810 orphan@rarediseases.org http://www.rarediseases.org 203-744-0100 Voice Mail 800-999-NORD (6673) 203-798-2291 Federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them. Committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service.