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INTRACRANIAL  HYPERTENSION
 
ALSO KNOWN AS
PSEUDOTUMOR CEREBRI
 
 
Pseudotumor cerebri is a condition in which the cerebro-spinal fluid (the fluid inside the skull) is not able to drain normally. When this happens, the extra fluid pushes against the brain in the same way a brain tumor would.
Common pseudotumor cerebri symptoms are headache and vision problems. The most common cause of pseudotumor cerebri, in children and adults, is obesity. However, many patients have the condition even if they are not overweight.
 
Pseudotumor Cerebri Symptoms
 
  • Headache is the most common symptom reported by patients with pseudotumor cerebri.
  • Vision problems or vision loss is the most concerning pseudotumor cerebri symptom
  • Severe side effects if lack of treatment:
  •  loss of balance
  •  seizures
  •  auto- immune disease (unknown if IH or AI comes first)
  •  high blood pressure
  •  organs affected causing additional medical conditions
 
Diagnosing Pseudotumor Cerebri
 
We suggest patients be evaluated in clinic when a child has severe headaches and optic nerve edema (swelling of the nerve that brings information from the eye to the brain). Patients may need to have the following:
 
  • Physical exam
  • Lumbar puncture
  • MRI of the brain
 
 
Pseudotumor Cerebri Treatment
 
There are a few treatment options for pseudotumor cerebri including:
 
  • Dietary changes
  • Medications
  • Surgery (in severe cases)
 
 
 
BELOW ARE A LIST OF LINKS AND ARTICLES RELATED TO THIS AWEFUL AND DEBILITATING DISEASE. WE HOPE YOU FIND THEM HELPFUL.
 
 
THE LATEST RESEARCH, AND MOST UP-TO-DATE INFORMATION AND RESEARCH IS BEING CONDUCTED BY DEBORAH GRYZBOWSKI, PH.D. AND IS AVAILABLE ON THIS WEBSITE!   
 http://csf-regulation-research.org.ohio-state.edu/havener/  YOU CAN ALSO MAKE DONATIONS DIRECTLY
TO THIS RESEARCH FROM THIS LINK. I HOPE YOU FIND IT HELPFUL!
 
 
THE PSEUDOTUMOR CLINIC AT NATIONWIDE CHILDRENS HOSPITAL
http://www.nationwidechildrens.org/news-room-articles/nationwide-childrens-hospital-sees-rise-in-children-with-pseudotumor-cerebri-opens-clinic-to-treat-these-false-brain-tumors?contentid=60994
 
 
http://www.nationwidechildrens.org/MultiMedia/GetYouTubeModal/61009
 
What is a VP Shunt? neuroanimations.com Graphic
 
 
This is an instructional video describing how to perform a lumbar puncture. This was created for the Internal Medicine residents at Brown University.
 
http://www.facebook.com/l.php?u=http%3A%2F%2Fwww.ncbi.nlm.nih.gov%2Fpubmed%2F21323404&h=jAQCYQcS8AQCSxNDgU1zG85MQcS8ET8BOfYN_oFcyWdjMsw
 
 
To study the effects of octreotide, a somatostatin analogue, in patients with Idiopathic Intracranial Hypertension (IIH). METHODS: We performed a prospective, open-label study of the effect of Octreotide on 26 patients with symptoms and signs of IIH, investigated by brain MRI and lum...
 
This is another great article from ASBAH (Association for Spina Bifida and Hydrocephalus), it explains going to school with IIH, as well as what you can do or not do with both a VP and LP shunt. For example, sports and amusement rides. Great read!
 
Here is a very interesting article on how ICP monitors are placed and how they work, there are 2 pages to the article and and image that you need to click on to enlarge to see how and where the ICP bolt is placed.
 
For those without insurance, you may want to try this:
The U.S. Department of Health and Human Services’ Bureau of Primary Health Care - 1-888-275-4772
Information on healthcare and public programs for the uninsured, including a search for local health centers and clinics.
Get Affordable Health Carewww.hrsa.gov Information on low- or no-cost
 
This looks like a pretty good resource for discounts on medication: Together Rx Access Program
1-800-444-4106
Offers a free prescription-savings card for residents of the United States and Puerto Rico who have no prescription drug coverage and are not eligible for Medicare. Cardholders may save as much as 40% on brand-name prescription medicines, though restrictions apply.
Together Rx Accesswww.TogetherRxAccess.com With Together Rx Access, individuals and families without prescription drug coverage gain access to immediate savings on hundreds of brand-name and generic prescription products right at their neighborhood pharmacies.
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