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Pseudotumor Cerebri

What is Pseudotumor Cerebri?

Pseudotumor Cerebri is a condition in which there is increased pressure of the cerebrospinal fluid, leading most commonly to headaches.


Pseudotumor Cerebri is a condition in which there is increased pressure of the cerebrospinal fluid, leading most commonly to headaches.
Acknowledgement of Pseudotumor Cerebri has not been added yet.
Synonyms for Pseudotumor Cerebri has not been added yet.
Most PseudoTumor Cerebri patients are obese females age 20 to age 45. There may be 12,000 in the U.S. with PTC. It is no longer just obese females that get this disease. Men, children and skinny females are also being diagnosed. The medical community needs to adjust their thinking on this.
There are several symptoms that affect patients with Pseudotumor Cerebri. severe headache; visual changes due to swollen optic nerves (papilledema); and a whooshing noise in one or both ears that is correlated with the pulse (pulse-synchronous tinnitus). While these three symptoms occur most frequently, it doesn’t mean that every person will have all of them. It is possible, for instance, to have chronic IH with pulsatile tinnitus and severe headache, but without papilledema. Other systems: Pain in the arms, legs and back (arthralgia) Severe neck stiffness Dizziness, lightheadedness and balance problems Parasthesias (numbness/tingling in hands, feet, face) Nausea/vomiting Rhinorrhea Endocrine problems Malaise Depression Memory difficulties Exercise intolerance See for full description of systems.
Name Description
Headache Headache
Eye pain Eye pain
Vision loss Vision loss
Double vision Double vision
Nerve palsy Nerve palsy in the nerve that stimulates the eye muscle to move the eyes side to side. (6th cranial nerve)
The Modified Dandy Criteria for Idiopathic Intracranial Hypertension is the official criteria used to diagnose IIH. According to the Dandy criteria, an IIH diagnosis is appropriate if a person: • has signs and symptoms of increased intracranial pressure, such as papilledema and headache; • has no localizing findings on neurological examination (Localizing findings are findings that point to injury of specific brain areas. For instance, a localizing finding could be the inability to move a certain muscle.); • has a normal MRI/CT scan with no evidence of venous obstructive disease; • has high intracranial pressure of 250mm/H2O or above on a spinal tap, with no abnormalities of cerebrospinal fluid; • is awake and alert; • has no other cause of increased intracranial pressure found. A secondary IH (SIH) diagnosis generally pinpoints the cause of the elevated intracranial pressure. Consequently, there may be abnormal findings, in addition to the signs and symptoms of increased intracranial pressure and a high opening pressure on a spinal tap.
Diagnostic tests of Pseudotumor Cerebri has not been added yet
Drug Therapy Carbonic Anhydrase Inhibitors: acetazolamide (Diamox), Methazolamide (Neptazane). Other drugs with carbonic anhydrase inhibiting properties include furosemide (Lasix) and topiramate (Topamax). Other drugs for treatment of pain. Surgery: Optic Nerve Fenestration Neurosurgical Shunts - Most Common Types of Shunts: Lumboperitoneal shunt (LP shunt), Ventriculoperitoneal shunt (VP shunt), Cisterna magnum shunt
Prognosis of Pseudotumor Cerebri has not been added yet.
Tips or Suggestions of Pseudotumor Cerebri has not been added yet.
References of Pseudotumor Cerebri has not been added yet.

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Community Resources
Title Description Date Link
Intracranial hypertension Research Foundation

The Intracranial Hypertension Research Foundation is the only non-profit organization in the world devoted to supporting the medical research of chronic intracranial hypertension.

Pseudotumor Cerebri Support Network

The website of the Pseudotumor Cerebri (PTC) Support Network.


Clinical Trials

Cords registry

CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.

Enrolling is easy.

  1. Complete the screening form.
  2. Review the informed consent.
  3. Answer the permission and data sharing questions.

After these steps, the enrollment process is complete. All other questions are voluntary. However, these questions are important to patients and their families to create awareness as well as to researchers to study rare diseases. This is why we ask our participants to update their information annually or anytime changes to their information occur.

Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.

Visit to enroll.

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Hi I am a 33 year old mother and after many years of pain and confusion and many trips to doctors and ers, I finally have a diagnose of IIH. I received the news on Dec. 24th 2013. Not the Christmas...
Was just diagnosed, looking to find answers.
Diagnosed with pseudo tumor cerebri and chiari I malformation after a hectic run in with a terrible in with a terrible neurologist. Its a tough disorder to have, but I stick it out, my family...
Diagnosed on 12/16 with Psuedotumor Cerebri. Took 4.5 years to receve diagnosis. I'm interested in learning all I can on this subject.
I 22 and currently engaged to the greatest guy I have ever met in my life. I am attending beauty school and will graduate in Sept. 2011. I was diagnosed and treated for Pseudotumor Cerebri in May...
I am a 19 year old and I was diagnosed with MWS about a year and a half ago. I am interested in sharing.

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