Anyone have experience of papilloedema?

[angelineMcqueen]

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?!

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.

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.

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.

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

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).

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.

great news..

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

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

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.

Hi
Just jumping on this thread hoping someone can give me some answers.
My healthy full of life 8 year old had a routine eye test where they mentioned blurred margins of the optic disc. Today we went to the hospital to see the dr there to discuss this. The dr said it looks ok no haemorrhages no symptoms etc. He said he would see her in 3 months time. He said he could do a brain scan if I was worried but then when my daughter got upset he said “oh let’s leave it it’s not needed”. Can anyone give me any positive stories I’m worried sick. Surely if he felt a brain scan was needed he would have sent her for one. He said it was for my peace of mind.

@Annie5213

Hi,

Just wondered if there was any update?

xx

She is still absolutely fine symptom free so they believe it to be congenital. We have a review appointment in January but there has been no change in her health wise. Apparently it can be something your just born with.

@Annie5213

Ah, that's great news.

Did your DD have the MRI?

xx

No she didn’t. The report from the hospital came back and it said “no evidence of papilodema” so he was saying that although the disc margins were blurred it was due to the congenital abnormality. She didn’t have any bleeds behind the eye or any symptoms. The mri could have been done if I wanted to ease my mind but he felt it not needed. I didn’t want to put her through any unnecessary testing. The follow up appointment is just to check how things are at a paediatric clinic. Have you had a similar problem?

@Annie5213

Ah, glad to hear everything is ok.

Yes, we had our hospital appointment today and DD had loads of tests and scans. The doctor said she has drusen in both eyes and I could have an MRI if I like. This has terrified me, my mind is going mad and I'm wondering why on earth he would say that.

He showed me the drusen on his screen - but it just looked like weird photos to me, lol.

I am relieved but still a bit unsure even though the letter for the GP says bilateral drusen.

xx

So it sounds similar really. My daughter doesn’t have drusen just the “blurred optic disc” which apparently seen often with short sighted or long sighted I can’t remember which she is now but often seen with whatever one she is.
I asked loads of questions and the dr could tell I was highly anxious which is why he said she could have the mri he even said there is no point parents worrying etc.
We’re you anxious could it be the same for you? Did you take the mri.
They also reassured me that if they had seen anything concerning my daughter wouldn’t have been leaving the clinic. There was a teenage boy there at the time and he was sent straight to Birmingham. They don’t take any chances.

Ah, that does sound similar.

The optometrist that referred us is actually a friend of mine who knows I have severe anxiety.

Only problem is that the offer of an MRI has planted a seed in my head.

The hospital did say that there is absolutely no evidence of swelling - it's just drusen.

xx

Sounds exactly the same. My story is from September and there has been no changes no symptoms at all. Little girl is still full of life and driving me nuts!! Lol. I think it’s the fright isn’t it I was the same but a friend of mine works in the department we went to and they said there is no way she would have come home. They refer so many on to bigger hospitals if she had needed the mri they would have insisted not given us the choice

Hi @Annie5213

Did your DD had her appointment in January?

How did it go?

xx

Sorry for my delay in replying. The jan appointment went ok but he decided she needed the mri scan to be sure. Results came back normal thank goodness! Hope this reassures you.

Hi there. I have come across your message. My 19 year old son went for routine eye test. No issues vision perfect and no symptoms but told he had a “raised nasal margin” in one eye only and has indicated it is drusen. Has been “Routinely” referred to hospital for “Confirmation of diagnosis”. This was done at Specsavers where they have a OCT machine. I’m scared to death, my son has no symptom but the appointment has come through for December which seems ages away. Did you ever get to the bottoms of your child’s problem? Thanks