Our Ordeal With Pseudo Tumor Cerebri

Our eleven year old son, Josh just had surgery for Pseudo Tumor Cerbri also known as benign intercranial hypertension. There is no cure for this disease. The road to treatment has been a long one.

It all began on Sept. 29, 2008. Josh was at football practice when he suddenly had the worst headache of his life. He could barely talk the pain was so bad. When we noticed that he could not walk straight and was losing his balance we called his pediatrician and took him to the ER. They took a CT scan but he never saw a doctor. We waited three and a half hours for the pediatrician on call to show and no one ever did. He finally asked to go home.

We took him to his pediatrician's office the next day. It took a week but they finally diagnosed him with mono. He was on 800mg of Ibuprofen every 6 hrs but usually only lasted less than four before the headaches would return.

The headaches continued for five to six weeks with the Pediatrician saying it was mono. When they could not further explain it they said it was all in his head. That was the last time we took him to that particular group of Pediatricians associtated with Carolina Pines Hospital in Hartsville, SC.

We changed to Dr. Tim Spence in Florence, SC. He got us in with a neurologist the same day. Unfortunately, after MRI's and visits this neurologist diagnosed him with a sore neck and recommended physical therapy along with Topamax, muscle relaxers, and strong chronic pain medicine that would make him high. We went straight from there to the chiropractor. Dr. Jackson gave him some relief after the first visit but the next couple of adjustments didn't offer any relief. He was honest enough to tell us up front that he could adjust his spine to help the body heal itself but some conditions called for a medical doctor.

At this point it had been over 10 weeks of daily headaches, joint pain, dizziness, and just feeling miserable. Someone I work with recommended Duke University hospital.
We contacted Dr. Gerald Grant Pediatric Neurosurgeon at Duke Children's hospital.


Dr. Grant scheduled a spinal tap which showed elevated Cerebral Spinal Fluid (CSF) pressure. He put Josh on Diamax to lower the pressure. We thought it worked at first but within a few weeks his symptoms returned with a vengence. He did another spinal tap which revealed his pressure was 41. It should be between 5-15. Dr. Grant scheduled a surgery to place a shunt in his head in which a tube is put in the ventricle of his brain in order to drain off excessive spinal fluid. Here is a video that explains the surgery. http://www.cancer.duke.edu/btc/modules/learningcenter15/index.php?id=1

In the three days since his surgery his symptoms have improved. He hopes to go back to school for the first time in five months soon.