My son is 8 years old and has been diagnosed with optic nerve drusen. It was actualy caught last year, and we went to a specialist then who said he was probably born with it and there is not much you can do and not to worry about it. Well, this year we went for yearly eye exam and we were referred to another specialist who is alot more thorough and ran a dozne tests on his eyes, had severla doctors coming in and out of the room etc. She said that also his right eye is showing signs of swelling in that area. she did a B Scan as well. She was not comfortable with the results and is sending us to have a CAT scan done and then wants a MRI done as well. I asked them at the end, so if these scans show there is not a tumor/lesion (which is what they are worried about) what does that mean? And they all just looked at each other kind of strange. I said what does that look mean, is it normal to have the drusen in both eyes, should we be concerned? they just said well it;s not good. (what the heck is that supposed to mean?) Can you give me more insight??
Optic nerve drusen can look like papilledema-swelling of the optic nerve. This can be due to a brain tumor or swelling in the brain.
If your first doctor was correct, the other doctor misdiagnosed the problem. Unless he was having other problems, the first doctor was probably right. It sounds like you had a bunch of expensive test that did not show anything. Did you let them know that another doctor already make the diagnosis of optic nerve drusen?
We did mention it to the current doctor about last year the other specialist finding the drusens. She asked several times if my son ever complained of head aches or pressure etc. whiah he never does, and asked him as well. They seemed surprised at this as well. IS this the only other symptom that would manifest if it was somehting more than the drusens? And if it is the swelling, would it be on both eyes? Thanks!
I came across your message above from 2009. My 9 year old is going through the same process (MRI scheduled for later in the month). Did you ever get more information about the drusen? I'm in panic/search websites/freak out mode right now. Thanks for any info you can provide - Kim
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