Urgent referral for swollen optic nerve-handhold needed for the 2 week wait

[OpticalDelusional]

My daughter is 13 and has been urgently referred to an ophthalmic neurologist due to a swollen optic nerve discovered today. She has no symptoms of a brain tumour but I'm worried sick. Does anyone have any experience of this? Handhold much appreciated.

I had this in October last year and the swelling had subsided within the two weeks between my eye test and my hospital appointment, they weren’t sure what had caused it or why it had self-resolved but no more came of it

Handhold here 🤝

Please don’t assume it’s a tumour. That’s the absolute worst case scenario. There are tons of reasons that are very harmless, and sometimes this happens for no reason at all. I have this occur quite often due to lupus (I have a lot of autoimmune issues) and I take steroids and immunosuppressive drugs to control it - and the other issues I get with lupus.

I'm so worried. They would have seen her at the hospital today if she was getting headaches.

Please try not to worry. We had this too in a teen, she was seen in a couple days (pre-covid & waiting lists) and after many different tests a whole morning at they eye clinic, they declared it as a swelling of the optic nerve yes, but natural and nothing more sinister. The optician explained it to us later: they are very cautious and always refer now when they see the slightest change in the optic nerve as there was a death from an undiagnosed tumor (or something else?) that could have been spotted...

My dd had this when she was 5 she was diagnosed with idiopathic intracranial hypertension.

I was referred due to a blurred optic nerve, when seen they concluded this was just the way mine was and nothing more, they like to be cautious like previous poster says.

I've know four or five children including my ds (who had to go the whole hog and have both swollen) have this, and been referred for an MRI and all of them have been fine. One of them the doctors actually told them to bring a hospital bag to the MRI because there were other potential signs, and he was clear too.

Hopefully your dd will be fine line them.

Ds does like to point out to his sisters that at least he has proof he has a brain! 🤣

DD was referred and it was fine - that’s just the way her optic nerve is

I has this and also diagnosed with idiopathic intracranial hypertension

Thank you, your posts are reassuring. Dd is more worried about her immediate plans to go horse riding and to Alton Towers next week with school. My instinct is to say no until she's been given the ok.

I had that, it was very painful but I don’t remember having anything for it, think it just went on it’s own.

My dd had the same, swelling of both optic nerves at age 9. She also had headaches. She had electrical nerve conduction studies and regular follow ups for a couple of years. There was nothing underlying and she is fine now. Try not to panic and don’t stop her doing fun things.

Honestly, horse riding and Alton Towers will be fine. If nothing else it'll be a distraction. There's just no point on putting life on hold for "what ifs". And if the what ifs come to be, then you'll regret not doing all the fun stuff you can.

I was tested extensively for idiopathic brain hypertension & was given the all clear. Optic nerve still looks odd but it's fine.

Fingers crossed.

There are a lot of eye issues and swelling being reported post Covid infections so potentially that, they seem to resolve eventually.

She had covid back in October. Needed new glasses in December and now needs new glasses again.

I would let her go.

The main thing you have to worry about with those type of activities is if there’s any issues with the retina. (I have retinal issues and can’t do any sort of intense physical stuff- so no roller coasters, no bungees, nothing like that incase it jolts my retinas and detaches them). You don’t have that risk with an optic nerve issue so she should be fine.

DS had this, had other things too so we went from optician to hospital consultant to rheumatologist to neurologist and it was found he has a condition which they found due to the tests, something to do with calcium build up but they only ordered tests for this due to odd bloods.

We also found, due to MRI, that he does have a tumour, non cancerous on his pineal gland but that wasn't anything to do with the optic nerve swelling (luckily was picked up due to the barrage of tests ordered due to swelling).

I think from what I remember they said they'd be more worried if there was a history of headaches and both eyes were affected.

Her appointment is tomorrow afternoon.

DD had an urgent referral. Sleepless night, trip to the eye hotspital, five hours later and we were told she had a tilted optic disc that made the nerve look swollen. No optician has mentioned it since so it could even have been a one off.

There was the beginnings of swelling back in December but it's now more obvious.

My dd has this at 17. They decided it was just normal for her. I hope everything is ok.

I'll just be glad once she's been seen tomorrow and we know what is what. It's the not knowing that I struggle with most. The optician says it's not something they tend to see but from reading the replies here it's not particularly uncommon. I've got someone to collect my ds from school and look after him until I get back so that's one thing less to worry about.

I went to the hospital for this at around 18 - but st the time it was a 3 month wait. I didnt realise it was a sign of a brain tumour at the time or I'd have been terrified. Anyway the point is I got told its quite common if you're short sighted. Is your daughter? Hopefully it will be nothing.

Just as a heads up I imagine they will give her drops to dilate her pupils so you will be there ages whole they take effect. Then she won't be able to see properly until they wear off, I think it was a couple of hours. It was a bit of an unnerving experience especially at that age.

Been seeing loads more of these referrals in the last year or two (probably as many as in the previous ten). Apparently there was a legal case where an optician was prosecuted for papilloedema, leading to the opticians and ophthalmologists referring every single remotely possible case. The vast majority of whom turn out to have nothing wrong. So it is worth getting checked out, so as not to miss anything, but the most likely outcome (potentially after some more investigations) is reassurance. But worth doing in order to pick up earlier the very rare child where there is actually a problem.