Pseudotumor Cerebri Support Group
Pseudotumor cerebri (PTC) is a neurological disorder that is characterized by increased intracranial pressure, in the absence of a tumor or other diseases affecting the brain or its lining. Diagnosis requires brain scans and lumbar puncture. Characteristic symptoms are headache, transient visual obscurations or transient visual loss in one or both eyes usually lasting...
My daughter was diagnoses after a dramatic loss of vision and had emergent surgery to insert a shunt. She sees a Neuroopthamologist at Mass Eye and Ear in Boston and has a Neurosurgeon at Mass General. She has been on Diamox for the entire time started out on 4000 mg a day and was reduced to 2000mg a day and after her last visit to the Neuroopthamologist he was concerned about a chage in her vision and increased the dose again.
Is it the norm to have a shunt and need to be on Diamox long term?
Does anyone know of an IIH expert if we wanted to get a second opinion?
Are there any on-line support groups she could join?
No, she shouldn't need Diamox after a shunt. Is the shunt functioning? What about optic nerve sheath fenestration?
You might want to try Johns Hopkins for a second opinion. Has she had MRV of brain and neck? It's important to rule out secondary causes. Also rule out obstructive sleep apnea.