Tell me about swollen optic nerves - what questions should I be asking?

[TellMeItsPossible]

My 18yo dd has been referred for an MRI to investigate swollen optic nerves in both eyes (she had some bloods taken and eye scans done this past week).

We've not been given much information, and I'll be ringing the hospital tomorrow morning, but what should I be asking? I don't know what I don't know, if that makes sense.

Trying not to fret.

Hopeful bump

Hoping everything's okay and you've got some answers. The reason for the MRI scan will most likely be to check inside her brain. I work in a neuroscience field so can only talk from that angle but occasionally (very occasionally so please try not to worry) additional swelling or pressure inside the skull can press on the inside of the optic nerve and cause it to bulge or swell (imagine how squeezing one end of the balloon makes the other bigger). There's loads of things that can cause pressure inside the skull as well as completely unrelated causes for swollen optical nerves and lots don't need to be worried about but when investigating these things they like to rule out the most sever causes first so the initial scans will likely be checking for urgent causes such as tumours or brain bleeds or other swelling of the actual brain tissue (these are all very rare and so unlikely so please don't worry it's just a case of hopefully ruling them out early because they're the issues that need most urgent treatment). It's also worth remembering that some people due to the shape of their skull do just have naturally slightly swollen looking optic nerves and never experience any symptoms but the only way to reach this conclusion is to rule out any other conditions and causes first. A common symptom that comes along with increased brain pressure is a headache that worsens after a period of lying down or holding your head upside down so that might be something to look out for. Also I'm sure you've likely been told this already but if she suddenly experiences a significant decline in vision, excessive vomiting or a serve throbbing headache seek further medical advice urgently. Hopefully that helps but if there's any more questions I can help with please do let me know

That's great, thank you. I've spoken to the hospital today, and they have downgraded the urgency of her MRI, so that hopefully means it isn't anything severe. She doesn't have headaches but knows to be aware of them. Fingers crossed.

Just wanted to say my daughter had a similar thing. Picked up at the opticians but they couldn't confirm what they was looking at due to the machine being non covid compliant. (It was July 2020)
I went away Googling all sorts of horrors. Our appointment came through within 2 days and they decided to do an ultrasound on her eyes...before an MRI and it turns out she has something call Drusen.. which is deposits on optic nerve. It makes it look like the optic nerve is bulging.
We have to mention it at every eye check up.
Hoping you get a similar diagnosis.
Take care

Thank you so much.

Following with interest. I have the same. Had a CT scan yesterday and awaiting results.

Good luck. DD has an appointment on 2 Dec for next steps.

Thank you. No news yet which I’m taking to be good news. Hope your daughter’s appointment goes ok.

Hi Op my 10yr old dd was referred 2 years ago for ‘thickening’ of her optic nerves. She had scans and six monthly checks. The thickening remained stable and didn’t increase or affect her vision. She is now in long term review. I also panicked and Google was not my friend! Try not to worry hopefully it will be something similar and cause no issues.

The optician noticed I had swollen optic nerves during a routine eye test about 10 years ago and I was referred to the eye clinic. Initially they diagnosed me as having a drussion, which surprised me as I had no symptoms. They did an mri and for a couple of years monitored me, with regular check ups, eye scans and field testing. Over the last four years I lost weight and the new consultant noticed that the swelling has decreased significantly. They now think I have idiopathic Intercranial Hypertension (IIH), but the weight loss seems to be helping.

I have to second what the previous poster said, Google really only tells you the worst case scenario’s. Good luck 🤞

That's really interesting and hopeful! Thank you.