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Original poster

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

41 replies

OpticalDelusional · 13/07/2022 17:55

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.

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Original poster
OpticalDelusional · 15/07/2022 10:35

Today's the day. Dd went off to school happily enough (she hates school) so that's a relief that she's not worrying too much. I've told her about the eye drops so she knows what to expect. It's just a case of getting through today for now.

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stayathomegardener · 15/07/2022 15:06

Fingers crossed it's something normal for her.

Original poster
OpticalDelusional · 15/07/2022 15:38

Thank you. We are at the hospital now.

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lunar1 · 15/07/2022 15:46

Hopefully you will be back with good news soon.

Squeezedsquash · 15/07/2022 15:48

Hope you get good news soon.

i had this at 20 and it was fine (apart from not being able to see for a few weeks). They did loads of tests ruling out MS, brain tumours, etc … but it righted itself and I’ve not had issues since.

Original poster
OpticalDelusional · 15/07/2022 20:36

The dr was so lovely and thorough. He thinks she has a crowded tilted disc that gives the appearance of being swollen. He's done a normal eye examination plus ultrasound, and the fundus photography. He's referred her for a visual field test and an urgent MRI of her brain just to be absolutely sure. He will follow her up in 6 weeks or so after the MRI. It appears to be congenital and nothing to worry about. I think the opticians need some training around this as the first thing he asked was has the optician scared you which they had. They need more knowledge to be able to say more than it could be nothing or a tumour!

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stayathomegardener · 15/07/2022 21:33

Glad it was so positive!

WhackingPhoenix · 16/07/2022 18:00

OpticalDelusional · 15/07/2022 20:36

The dr was so lovely and thorough. He thinks she has a crowded tilted disc that gives the appearance of being swollen. He's done a normal eye examination plus ultrasound, and the fundus photography. He's referred her for a visual field test and an urgent MRI of her brain just to be absolutely sure. He will follow her up in 6 weeks or so after the MRI. It appears to be congenital and nothing to worry about. I think the opticians need some training around this as the first thing he asked was has the optician scared you which they had. They need more knowledge to be able to say more than it could be nothing or a tumour!

I’m glad it was so positive! I think opticians have to be vague as they don’t have the equipment, testing facilities or specialist medical training to tell you what it may or may not be, and if they say it could be a tumour then people will go to pieces in that waiting period then get to their appointment and find nothing wrong and the optician will be in the firing line.

I spent those two weeks worrying myself sick though.

Original poster
OpticalDelusional · 29/07/2022 14:31

Dd has now had her MRI and coped very well. Aided by a McDonald's meal before and a McFlurry after 🤣 Her eye orbits have been scanned along with her brain. Now we wait. I'm hoping we will be shown the scan pictures because the lovely doctor showed us everything else and it will be very interesting. She was so anxious before and worried they'd find she had a tiny brain. This is the girl who's in the top sets for everything bar French. However in a mock exam she achieved a grade C and she's only year 8 so I don't think not being in the top set for French is a big deal🙄

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Boymum234 · 13/02/2023 19:55

Hi I've just came across this post and I'm currently going through something similar with my ds age 7. We have an appointment on Thursday to see the opthamologist at the local hospital I'm worried sick. How did the mri results go if you do not mind me asking?

Original poster
OpticalDelusional · 13/02/2023 20:49

It was all fine. They didn't go into any detail of the imaging. We were hoping to see her brain in all its glory 😁
I hope your ds goes on ok. They are getting loads of referrals now due to the imaging taken at the opticians. It's a scary thing but the hospital were very reassuring. I hope you get good results too.

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Boymum234 · 13/02/2023 20:52

What type of tests where done if you don't mind me asking? I've been worried sick and I Reading up on Google didn't help my anxiety from it all. He has no headaches or change in vision just at a routine optician appointment they said it looked abit different to the other side but he said he wasn't too worried. Trying not to worry yourself when it comes down to your children is easier said than done isn't it.

Original poster
OpticalDelusional · 13/02/2023 20:57

They did a basic read the letters eye test, looked in her eyes, repeated the photography, did a visual fields test (click the clicker each time you see a light dot), tested her with the colour blindness book thing you know the one with numbers in different coloured and sized circles on a background of other coloured and sized circles. Nothing uncomfortable or painful at all.

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Nsky62 · 13/02/2023 20:57

Please follow up stuff, I’m optically correct, tho have poor special awareness, due to Parkinson’s, brain signals, had it now a good 18 mths, I wish I could change it

Boymum234 · 13/02/2023 21:07

Thankyou for replying it eases my mind abit to talk to people who have had similar experiences. Thinking the worst is a habit of mine his appointment is Thursday so not long to wait now. Although I'm pressuming if a mri is needed it will be another wait.

Original poster
OpticalDelusional · 13/02/2023 21:23

The MRI was a 6 week wait I think. Then the clinic appointment was quite a long time after that. He was so reassuring at the appointment though and was 99.9% sure it was a tilted optic nerve but wanted to be 100% hence the MRI and only because I had a history of viral meningitis, chronic headaches, increased cerebrospinal pressure.

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