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Original poster

11 year old with swollen Optic Nerves

27 replies

Laumiller123 · 02/02/2022 17:27

Hi all, Im worried sick!!! My dd(11) has been for a specialist eye appointment today and her optic nerves are swollen. She has a MRI tomorrow morning to see if it’s a brain tumour!! The specialist said openly in front of my daughter “oh yes, there swollen, it could be fluid or it could be a tumour!” I was devastated. Any hope would be welcome x

OP posts:
BlackSwan · 02/02/2022 19:28

That's a horrendous shock - of course you're in a panic. Terrible way to break the news too. Thank goodness the MRI is tomorrow morning though & there's not a long wait. Try not to think about what the results will be and get what rest you can tonight.
How is your daughter generally? Was the eye appointment routine or was something amiss beforehand with her vision?

I've been through a brain tumour diagnosis with my son, when he was young. Hopefully that's not what your daughter has - but even in our case, he's doing well - thriving, several years later.

OnceuponaRainbow18 · 02/02/2022 19:29

Wishing you all the best for tomo OP

nodogz · 02/02/2022 19:36

I've got a rare eye condition so have seen lots of eye specialists. There are only two categories for bedside manner - amazingly kind, clever and reassuring or dreadful bedside manner. Complete binary. So, so sorry they have made you worry like this.

I have found that once I'm in the hospital things move fast and I get looked after well. Please try not to worry too much and I wish your daughter all the best.

Lulu1919 · 02/02/2022 19:39

Goodness what a horrible shock
Let's hope the MRI staff you meet are much more friendly and calming
Hope all,goes well

underneaththeash · 02/02/2022 19:45

I’m sorry OP, but yes it could be one or the other at her age. (Or there is a small chance it could just be that’s the way her optic nerves look or an usual vessel malformation.)

I’d concentrate on the fact that it’s been picked up and dealt with speedily and that’s what you want when your child potentially has a health issue.

Stalmida · 02/02/2022 19:49

That's not very tactful, especially in front of your daughter.

When I had inflamed optic nerves it turned out to be bilateral optic neuritis. Not nice but I recovered quickly with no lasting damage.

I hope tomorrow goes well.

alishylishy · 02/02/2022 19:51

I have just been through this exact experience with my child and can offer some reassurance.

We took her to the optician because her eyes hurt and got sent straight to a and e because of swelling to both optic nerves. She had had a bleed on one disc and the doctors were extremely concerned. We had a week in hospital with MRIs and other tests plus a course of steroids. The result of this is that she now has a diagnosis of optic neuritis, but has responded well to the medicine and now is pain free and her vision is back to normal.
The neurologist says it can be an autoimmune response to an infection and that this might be the only time she has an issue, I.e chances are she’ll recover and not have any further problems.

We were in exactly the same position as you a month ago, terrified of the results coming back with something awful, but they didn’t and hopefully you will have the same experience. I’m so sorry you are going through this, it’s an awful thing to experience but children are so resilient and there’s a very good chance all will turn out fine. Wishing you the best of luck

Original poster
Laumiller123 · 02/02/2022 20:15

Thank you everyone for replying, first time I have used this site and I'm not sure how you reply to each individual response?
My daughter was suffering headaches so I took her to the opticians, they spotted swollen optic nerve and referred straight to eye hospital. It's a massive shock to think it could be a brain tumour, I can't wait for MRI scan but I understand it takes a day or two for results. Everything you research takes you to worst case scenario!! I'm just hoping it's not what google tells me.

OP posts:
BlackSwan · 02/02/2022 20:42

It’s good you’re getting to the bottom of it whatever it is. I hope it goes well tomorrow - you’ll likely be able to go in and sit next to her while she’s in the scanner. Depending on the facilities she may be able to watch a dvd during the MRI. Wishing you strength and luck.

Original poster
Laumiller123 · 02/02/2022 20:58

Thank you xx

OP posts:
SouthOfFrance · 02/02/2022 21:04

Hope it goes well for you Op, it must be so hard waiting.

Perhaps try and focus on just being really supportive to your child and keeping them worry free and happy, showing them how to cope in this difficult situation? I'm sure you are already, but having something to really focus on might make this waiting time easier to manage & when you look back on this time you'll be proud how you handled it to the outside world, even if in your head you are going crazy with worry.

Original poster
Laumiller123 · 03/02/2022 18:55

Just wanted to provide a quick update. The hospital called Tonight and it's not a tumour!!!!! Thank God xx The eye department still don't know why she has swollen optic nerves so will refer her to a neurologist. So not out of the woods but so relieved I can cross that off the list xx

OP posts:
BlackSwan · 03/02/2022 19:01

Oh thank goodness for that! That's just such wonderful news!! I was checking to see if you had an update - thanks for sharing.

Have a relaxing evening!

I hope it doesn't take long to see the neurologist & that you get some answers. x

OnceuponaRainbow18 · 03/02/2022 19:04

Fabulous! Thanks for updating us

Sprig1 · 03/02/2022 19:07

That's great, what a relief.

FeelingOldandAlone · 03/02/2022 19:09

That's fantastic news! I hope they get to the bottom of it soon Flowers

Indoctro · 03/02/2022 19:12

That's great news and hopefully further news is positive too , until then try not to worry x

Thinking2041 · 03/02/2022 19:14

Wooopie! I bet you will sleep a whole lot more soundly tonight.

NatriumChloride · 03/02/2022 19:17

What a relief! So happy for you, OP!

foxgoosefinch · 03/02/2022 19:18

So pleased for you OP - glad to hear the MRI was okay. Thinking of you and your DD and hoping that it’s easy to resolve! Flowers

Cloverforever · 03/02/2022 19:19

My dd also has this and it isn't due to anything sinister. Hope you get to the bottom of it soon.

Rockinggently · 03/02/2022 21:07

I've just been through this with my DD. Opticians spotted that both optic nerves were swollen but reassured me it was unlikely to be true papilledema. She had an MRI and they frightened me to death by calling at about 8pm a couple of nights later to say she needed to go in the following morning for a lumbar puncture. After a rather difficult time (lumbar puncture failed 3 times) she was diagnosed with Idiopathic Intracranial Hypertension. The signs of this could be seen on the MRI but they needed to confirm with a lumbar puncture.

I was very laid back about it all because the optician had me convinced it would be nothing and everything was precautionary. We're currently trying to get her into remission but it's going to take time. They do take swollen optic nerves very seriously due to the potential for sight loss and we don't currently know if DD's vision has been impacted permanently.

Not sure I can be of any help to you, but I've felt very alone with it all (only 60 kids a year are diagnosed with IIH) and of course your DD could have something completely different, but I'm happy to offer you a handhold if nothing else.

underneaththeash · 04/02/2022 07:10

That's good news OP.

MrsEricBana · 04/02/2022 07:22

I'm so pleased no tumour was found. That must be an enormous relief. My neighbour's daughter had similar several years ago and I remember my friend was very upset and worried but nothing came of it and she's fit as a flea now. Flowers

Original poster
Laumiller123 · 05/02/2022 09:21

Hi all, so spent 9 hours in the hospital yesterday having various tests, it was worth the wait. My daughter has Optic Disc Drusen, calcium deposits behind the eye. Drusen shows symptoms of having swollen optic nerves which obviously can be very serious, so I'm sooo relieved! On this occasion I can't fault the NHS for the speed of getting seen and getting results.
(Rockinggently) - the doctor in the morning discussed a lumbar puncture, and as you are, I was worried sick and felt very alone, Googling what all this means between tests! I hope your daughter gets everything sorted and under control xxx

Thank you to everyone who commented on my post and gave support, it really helps when you hear others have been or going through the same thing rather than google telling you every worse case scenario xxx

OP posts: