A few hours after we left, Dr. Grace contacted me with the results. The ultrasound revealed both optic nerves remain swollen but there is no sign of drusen. I was really hoping drusen would be the culprit because the alternative can be really scary. Dr. Grace seemed to be as unsettled as me because she stated she was going to page Dr. Elton, Neurosurgeon, tomorrow. She sent him the optic nerve photos from last week but he was out of town. The fact that she is paging him has me alarmed. She also asked the radiologist to take a second look at the MRI that Rayden had in January. He originally said his ventricular system was mildly increased from last year but nothing out of the ordinary. His re-read was the same. But my mind wonders if he was only looking for intracranial pressure or ventricle sizes NOT tumors or abscesses. Something HAS to be causing his optic nerves to swell.
(Some causes of increased pressure from CSF and papilledema are brain tumors and brain infections, such as brain abscess, meningitis or encephalitis. One condition can cause increased pressure in the CSF without associated swelling of the brain or ventricles. This condition, called pseudotumor cerebri or benign intracranial hypertension, is caused when the body makes too much spinal fluid. This is a common cause of papilledema when the brain scan is normal.) Pseudotumor cerebri really doesn't make sense to me because Rayden already has a shunt that is suppose to drain excess CSF. I'm certainly NOT a brain surgeon but I just have a bad feeling about this.The life of a person with Spina Bifida...It can be ANYTHING at ANYTIME all your life!!
The next day Dr. Elton's nurse, Melody, called to say he wanted to see Rayden next week. She didn't say what he wanted to do or what he was thinking, just that he wanted to 'see' him.
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