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Anyone have experience of papilloedema?

(10 Posts)
angelineMcqueen Sat 28-Oct-17 23:07:51

My DS, age 8, has been referred (urgent 2w referral) to hospital after optician said his optic discs looked blurred at routine eye test. She said it may be nothing, (congenital anomaly), but it could be papilloedema, so needs referral to optometrist for proper diagnosis (this was 3 days ago now).
I am waiting for appointment letter from hospital (which now won't arrive till Monday at earliest), in the meantime, everything I've read about papilodema is completely freaking me out, and I'm scared to death they're going to find a brain tumor or something horrendous!
Does anyone have any knowledge/experience of this please?? What was the outcome?? Should I be taking my DS straight to A&E?!

Eppia Sun 29-Oct-17 22:07:20

I had this. I’d had many, many eye appointments in the past (I’m very shortsighted) which all went smoothly, and then, out of the blue, I was told had swollen optic discs which might suggest ‘something pushing from behind.’ That was slightly worrying! However, after a visit to the eye hospital, it was confirmed it was just congenital. Evidently no previous optician had thought anything of it. I reckon they are now just being ultra careful.

One tip - when your DS goes for his check-up, they will put in some slightly stingy drops which will dilate his pupils. Take sunglasses for him to wear afterwards, as until the pupils go back to normal, everything is uncomfortably bright.

I wouldn’t worry - if he’s had no other symptoms, it’s very likely there is nothing wrong.

angelineMcqueen Sun 29-Oct-17 22:41:23

Thank you so much for your reply, it has made me feel slightly less worried!

He hasn't had any other symptoms at all (which is the only reason I haven't rushed him up to the hospital)! It's good to know there is someone else out there with optic discs the same as his, and that it can just be congenital.

Thanks for the tip with the sunglasses - I'll make sure I take some for him. I hope the appointment comes through soon.

Tholeonagain Wed 01-Nov-17 21:14:04

A friend of mine has just been through this with her daughter - she was fine. There is something called a pseudopapilloedema which is quite common in children - it is harmless.

Mysharonawoana Sat 04-Nov-17 18:20:30

My DH had this when he was 8. He’s now 35 and had no further problems.

underneaththeash Sat 04-Nov-17 20:06:48

Its unlikely to be anything serious (but not impossible) if your DS is not having any symptoms and the Optometrist didn't find any haemorrhages on the retina. It could be pseudopapilloedema or sometimes the disc margins look blurred if they are very tilted or if there are some optic disc drusen (both of which have little clinical significance).

angelineMcqueen Mon 06-Nov-17 22:40:18

Thank you for the replies. DS has now been seen at the hospital, and they've confirmed there is nothing to worry about, phew, I am so relieved!! It looks like he has optic disc drusen - he's booked in for an ultrasound in 2 months time just to confirm for sure.

underneaththeash Wed 08-Nov-17 23:07:44

great news..

Incidentally, they are easily seen by an OCT which more and more optometric practices are now using.

Missmiller Thu 09-Nov-17 15:42:01

OP I am going through a similar thing and am terrified by it. My dd has a blurred margins around optic disc in one eye only. Awaiting appointment with ophthalmologist. Any advice would be greatly appreciated xx

TallulahMazda Mon 20-Nov-17 14:59:01

Hi, thought I'd post as I'm slightly further along the line and it may help. My teenager had a same day referral to eye hospital for blurred disk margins in August? had numerous scans and an ultrasound of the eye which showed possible Drusen but not many therefore we may need a CT head to look for other causes so that maybe something that's mentioned to you too. Not to scare but for completion of the assessment. Whatever you do, don't google. Lots of information to be had at the appointments. Hope everyone gets sorted out quickly.

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