The Human Phenotype Ontology (HPO) provides the following list of features that have been reported in people with this condition. Much of the information in the HPO comes from Orphanet, a European rare disease database. If available, the list includes a rough estimate of how common a feature is (its frequency). Frequencies are based on a specific study and may not be representative of all studies. You can use the MedlinePlus Medical Dictionary for definitions of the terms below.
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 in order to determine the best approach to treatment of this condition.
If a diagnosis of pseudotumor cerebri is confirmed, careful and repeated eye (ophthalmologic) exams are required to check for any changes in vision. Medications such as acetazolamide, furosemide, glycerol, and
An article from eMedicine Journal provides detailed information regarding the treatment of pseudotumor cerebri at the following link: http://emedicine.medscape.com/article/1143167-treatment. You may need to register to view the article, but registration is free.
Research helps us better understand diseases and can lead to advances in diagnosis and treatment. This section provides resources to help you learn about medical research and ways to get involved.
Support and advocacy groups can help you connect with other patients and families, and they can provide valuable services. Many develop patient-centered information and are the driving force behind research for better treatments and possible cures. They can direct you to research, resources, and services. Many organizations also have experts who serve as medical advisors or provide lists of doctors/clinics. Visit the group’s website or contact them to learn about the services they offer. Inclusion on this list is not an endorsement by GARD.
Living with a genetic or rare disease can impact the daily lives of patients and families. These resources can help families navigate various aspects of living with a rare disease.
These resources provide more information about this condition or associated symptoms. The in-depth resources contain medical and scientific language that may be hard to understand. You may want to review these resources with a medical professional.
Rare Tumors Initiative Symposium Strategies to Develop Therapies for Rare Tumors: Small Numbers, but Big Opportunities
Wednesday, June 17, 2015
Location: NIH Natcher Conference Center, Bethesda, MD
Description: The goals of this symposium are to increase communication and build networks between researchers working in rare tumors across NIH, and to get input from patient groups, industry, and the FDA on how to overcome the biggest hurdles in the development of therapies for rare tumors. The Rare Tumors Initiative at NCI, CCR will use this information to prioritize goals for the future and will prepare a white paper summary to help guide researchers worldwide.
Contact: Dr. Karlyne Reilly,(301) 846-7518, firstname.lastname@example.org
Co-funding Institute(s): National Cancer Institute, Office of Rare Diseases Research
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I was diagnosed with pseudotumor cerebri four months ago. I have been taking medications to treat it, but I have headaches again. Will this go on forever? See answer
I have pseudotumor cerebri. I had a lumbar shunt, a revision surgery, and weight loss surgery. I still have pressure in my head from time to time. Should I be worried? See answer
How is pseudotumor cerebri treated? What is the prognosis for patients with this condition? See answer
Are seizures linked to pseudotumor cerebri? See answer