Good luck with the pediatric neurologist. I'm glad to see that you're getting another opinion. I would definately ask that a neurosurgeon also be consulted to look at the MRI. Not to necessarily do any kind of surgery, but to add their wealth of knowledge about the structures of the brain to help in getting to a diagnosis. Good luck. Please keep us posted.
Is she on any kind of medications in the meantime? Several kinds of antidepressants and even anti seizure medications can do something to block the pain while you're waiting for a diagnosis.
Did they do any testing on the cerebral spinal fluid after the myelogram? She should be tested for MS. Also lymes disease. The white spots could still be from severe migrane, too. Did anybody suggest a cerebral angiogram? This is a dye study that shows the blood flow to the brain. If it is obstructed from a congenital defect, damage could occur in the area that is not receiving good blood flow, hence the scar tissue (white spots). Prior to doing that, an MRA (magnetic resonance arteriogram) would be a good thing. Totally non-invasive, its done exactly like an MRI and takes 5 minutes. Ask about these tests. Again, good luck.
One last thought. Google pseudotumor cerebri. This is a condition where the base of the brain herniates down into the spinal canal when a person is standing or bears down. It can be surgically repaired. One way it is dianosed, in addition to MRI is to look at the cerebrospinal pressure when the lumbar puncture is done. If the pressure is high, something is obstructing CSF flow and causing high pressures and headaches. Ask if the pressure was elevated on the lumbar puncture. They should have done a pressure reading when they did the myelogram.
I hope I'm not overwhelming you. Its just that there are so many potential causes of this and only a very qualified neurologist and neurosurgeon will be able to properly diagnose your daughter.
Post Edited (diamond911) : 11/3/2005 7:49:59 AM (GMT-7)