I have been on a self-imposed internet breather just until I could get through the worst of this climb up the medical scare ladder with my 11 year old daughter. Because every time I get online I start googling “papilledema” and convincing myself of the worst.
We took her to a very good opthamologist. So good that it took over 3 months from the time her optometrist said, “I don’t like the way her optic nerve looks” to the time they could see us. I expressed concern but the optometrist assured me that it looked like it was just a different hereditary structure but wanted to have someone else look at it just in case – but no emergency.
We were at the opthamologist for three hours, when he finally told me that her optic discs that should like like doughnuts around her optic nerves instead have no middle – they are pressing completely around the optic nerves. And that the left nerve is entering her eye at a tilt instead of straight on like a healthy nerve.
There are many things that could be causing this – from a virus, to a brain tumor. Good signs are that she hasn’t experienced headaches or dizziness or vomiting. Bad signs are that her eyes have begun to protrude a bit and she has circles under her eyes. And her eyesight has recently drastically worsened.
So we were sent up the ladder to the pediatric neuro-opthamologist. We had to wait a few days, when he said normally a diagnosis like this would be immediate MRI at the hospital. I am trying to remain calm. He said that if he saw fluid behind the eye he could drive her to the best hospitals himself- but that he didn’t, and thought that we were okay to wait. I asked him if it was his daughter, would he wait – he said yes. I hoped that trusting him was correct.
So we had the scans, more exams and photos of the back of the eye, another opthamologist, the pediatric neuro-opthamologist, tests and more tests, and still had to wait for the formal meeting for an answer.
The good news is that the pressure levels in and behind her eye are good. Bad news is that even in two months, the sight in her left eye is decreased even more. All doctors are very concerned with how it looks – but we find that there is no tumor. The neuro-opthamologist says that papilledema is quite often considered ’something horrible with the brain until proven otherwise’. They are on the road to proving otherwise.
So now we wait two weeks. We will do another visual field test and neuro-opthamologist office visit to see if the vision is getting worse, or improving. Improvement could mean it is a virus after all. Worsening, or staying the same, will mean a spinal tap and moving on with neurology workups.
I’m more optimistic, still scared to death, but willing to venture back into cyberspace. Which can be a very scary place when you are moving up a medical diagnosis ladder.
I had no idea this was going on — been really absent from our usual haunts lately — you have all my good wishes and big cyber-hugs directed your way.
Oh, man….I hear you about the “moving up the ladder” bit. And also about the worry and fear: it’s as if you almost want to hear something (even if it’s awful), because at least then you know what you’re dealing with and how to proceed. With what your daughter’s going through, it’s like “OK, vision problems: not good, but heck, lots of people have that.”
But when the specific problem is one which can frequently indicate something much worse, well, that’s when you don’t sleep so well at night. I notice you’ve not updated this since the end of March – it’s coming up on two weeks: do you have any new news? I can only send as much hope as I can spare your way, since no matter what else, you’ll just have to wait. That’s the hard part…waiting.
And I totally get your absence from the internet, too – just too much to keep up with/take, at a time like this. We’ve been going through the same kind of thing: Meredith is back in the hospital again – this is the fourth time (dammit), so I’ve been horribly lax in keeping people updated on an individual basis.
But I hadn’t even taken time to come by and see your blog, so it’s actually a nice break for me to be able to do that. And what do I find? You’re on wordpress, with the MistyLook theme by Sadish – LOL. I guess we’re birds of a feather, if you’ve noticed: mine is a self-hosted wordpress installation, with another of his themes: “Paalam.” Someday, if you’re interested, I can show you how to set up your own server at home, so you don’t have to worry about someone else having permanent access/control of your data. All you need is a broadband connection and an old computer that you can use as a dedicated server.
Well, I should probably get back to the mounds of laundry and dishes which have both inexorably piled up in the last three weeks, as both Beth and I have shuttled back and forth between the hospital and trying to maintain some semblance of a normal life for our younger one. Really nice to hook up with you again online, though.
I have a friend who’s 7-yr. old is going through something similar. What pediatric neuro-opthamologist did you see? What city, state?