Swollen optic nerve. LONG POST.. sorry!

[MissD92]

Hi all, I took my 11 year old son for a routine eye tests 3 days ago. He’s got 20/20 vision but the optician noticed a swollen optic nerve in his left eye. We were referred to the hospital and was seen today!

The consultant we saw didn’t look at my sons eye pictures taken at the opticians and when asking my son questions about dizziness and headaches my son would reply yes I have them both and ringing in ears, for the specialist to say ARE YOU SURE!! He didn’t even look in my sons eyes and just said have you had an eye test, how did you get referred to us! (Clearly not looking at my sons notes) Then we were told by said “specialist” oh yes a lovely and juicy swollen optic nerve, just what we like to see in children’s eyes, totally normal! He opened the door for us to leave, didn’t even get a goodbye from him. 😂

I guess I’m ranting on here as iv looked online at all possible causes of an optic nerve and I guess I’m worried. Specsavers aren’t happy about todays outcome and have referred us to another local hospital.

I've known loads of dc diagnosed with swollen optic nerve (my ds, just to make sure had two!) at the opticians. In none of them has anything sinister been found.
But most of them have had a head MRI. I'd question if there's a reason why he didn't have one.

Thankyou! So should I ask for an MRI in our next appointment? I was just so annoyed yesterday at how my son was treated I didn’t think to ask questions at the time!

I’ve been through this OP. In our case it was a sub-acute subdural haematoma (a head injury) which is life-threatening but very easy to drain and remove.

Take him back to Specsavers for new measurements. If the swelling increases, they will update you. my son is alive with 20/20 vision because when the vision express optician wrote her referral letter she showed how the measurements had changed over 3 months.

re different hospital - you need a tertiary hospital that does neurosurgery. We were ignored in Bradford but Addenbrookes considered it urgent.

Team Specsavers all the way here. It’s 99% nothing but we were the case where the 1% happened 100% to us.

Definitely need a second opinion. I was diagnosed with Intracranial Hypertension after an eye test/referral to hospital (as a teenager though). I had an MRI. I had no other symptoms of it but a lumbar puncture confirmed it. Wouldn’t know any different if it wasn’t for an eye test!

Don’t panic though - there are many many causes of optic nerve swelling!

I'm going through the same at the moment except my ds hasn't had his appointment yet. The wait is so worrying.

Exactly the same for me. But as an adult.

Glad specsavers are rereferring. Please don’t worry too much op, as PPs have said there could be a million reasons for the swelling, don’t let Google panic you x

That's a very good example of poor clinician communication skills.

So it's unilateral (one eye) disc swelling is very unlikely to be caused by a brain tumour or by idiopathic intercranial hypertension. They cause both discs to swell.

Optic neuritis in children is the most likely cause of unilateral disc swelling, but that usually causes a reduction in vision and colour vision changes.

So, the most likely cause would be a pseudopapillitis, so it looks raised through something like disc drusen or a congential issue.

Did they do an OCT? That can be diagnostically very useful.
When your son gets home, can you get him to check his colour vision with something red. So, just put it in front of him and cover one eye and then the other and see if there's a significant difference.

Hi I am going through this exact thing at the moment with my daughter , specsavers picked it up and we have been in hospital 6 days since with tests after test and vision tests etc. she has also had an mri and a lumber puncture . My anxiety is through the roof to say the least . Did anyone of you find it was nothing to worry about ?

Specsavers thought my daughters was swollen but it is actually twisted, they think she was born with it but it wasn’t picked up until she was 12.
Because of the twist she has a few blind spots they were monitoring her for 4 years, there were no changes so she has been signed off. She saw a Moorfields consultant but at our local hospital.

Hi my son finally had his appointment and they did a range of tests and he got thoroughly checked by specialist consultants ect and it turned out to be nothing! I was so relieved. Its still raw the feeling and the panic as If it was yesterday.. hope everything goes well for you. I got told by the consultant that sometimes people's eyes are just different and that's fine and nothing concerning like my sons

Charmarie123

what have you been told?

Boy mum that’s good it takes a while to come down from.

I’ve not been told much other than to carry on with these steroids x

Specsavers are brilliant for picking up these problems. They picked up intercranial hypertension for me, from swollen optic nerves and discs.
It was a long few days in hospital afterwards with MRI's and lumbar punctures to find the cause.....thankfully idiopathic.
I am diagnosed 4 years now, the first year was rough, getting the medication balance right. Now I hardly know I have it x