Second Ophthalmologist has different opinion on swollen optic nerves

[boble1]

Hi

My daughter has blurred optic discs.

Had loads of eye tests and scans at the hospital. Had an ultrasound and was told it was Drusen in December.

Had a follow up today and had the same tests - this ophthalmologist said there are no Drusen to be seen on the ultrasound.

All the other results are identical to the previous, nothing has changed at all.

The discs are blurry but there is no evidence of any swelling or sinister from the brain.

We are going back in a month for another appointment.

Feeling a bit confused and worried now.

Does anyone have experience of swollen optic discs and it being normal for their child?

Thank you x

Hi there, my daughter (15) was diagnosed with this two years ago. Apparently all harmless. She also started having seizures 3 years ago and after 3 clear EEG they are saying it's definitely not epilepsy. I have asked if there is a link between the swollen optic nerve/drusen but doctors are all adamant there is no link! Me? Not so sure.

Hi

Thank you.

This chap was adamant there is no drusen, just swollen discs.

He said it may be normal for her?

I hope your daughter is OK? Such a worry xx

Have you had an OCT? There can be little doubt if you’d had one if it’s drusen or not.

Hi @posterunderneaththeash

Yes, DD had an OCT last month and then today.

The drusen was seen on an ultrasound last month but not today.

They told me this is the gold standard for seeing drusen, as it may be buried.

The chap said everything looks good in the eye apart from the swollen discs - the retina was fine - no swelling or bleeding, etc.

TBH, I'm so upset now, having to wait yet another month.

I've got some images that I can't make head or tail of, so very frustrating.

Has she been offered an MRI scan?

Hi @MissClementine

No, not yet. We have to see if there is any difference next month.

I'm even more confused now as I spoke to our original optometrist and she said when she did the slit exam with the 3d (volk) lense, she saw drusen discs.

I spoke to the GP today and she said if there was any worry of any sinister, my DD would be referred straight away for an MRI.

I seriously don't know what to think any more.

We had a similar experience with my child, blurred optic disc margins seen at a routine eye test at about age 12. Referred within a few days to ophthalmologist at hospital. Lots of tests for drusen and other things which I can’t remember but nothing found and to rule out anything sinister a MRI was ordered. Came back completely fine. Conclusion was it was just the way he was born and nothing wrong.

All of that was from having a routine eye test and the whole stressful time lasted about 3 weeks from opticians test to getting MRI result.

I have drusens. Similar thing, picked up in routine eye test, was sent to GP who immediately sent me to eye hospital. Had barrage of tests over 2 weeks including scan, ultrasound and MRI. Was really stressful as i assumed something really serious. Was diagnosed with drusen and kept on as an outpatient for a few years to monitor.
I know its worrying but chances are it's nothing serious.

Hi

I just can't understand why it's taking so long and we are on a watch and wait.

I've totally lost my faith in the doctors now with one saying yes it is drusen and one saying no it's not. The first one saw them on the ultrasound - how can he confirm this in the letter and then on follow up, another doctor said no.

My GP is waiting for a letter from the hospital and will ring me and explain things to me.

@boble1 - can you post the images - or PM them to me?

it is always worrying when 2 specialists don't agree.

An OCT is the gold standard for differentiating between disc swelling and disc drusen and it is usually fairly easy to see the drusen on the OCT. Your GP is correct though, she would have been referred for an MRI if he was worried

@underneaththeash

Hi, oh, that is very kind of you, thank you.

I have a few images, a 3d picture of each disc, a blue light auto fluorescence, and another black and white one. I don't have the red, green and yellow one.

Shall I scan them and send as an attachment?

That really is kind of you.

I'm going to take her privately to see Luis Amaya on Monday.

xx

Yes, please do. I'm happy to have a look.

Hi,

I'm afraid I don't know how to add attachments in a PM.

x

I don’t either. I hope the appointment goes well on Monday. A third opinion should help (although have you checked that the hospital you’re being seen at has an OCT?)
Many optometrists have OCTs as well now.

Absolute disaster today - after getting myself worked up, I received a telephone call saying the consultant was ill and was cancelling his clinics.

Now rebooked for next Monday.

@underneaththeash

May I ask you a question?

When my DD had her original eye test, the optometrist said she saw a drusen disc on the 3d bit of the slit lamp test. (Whatever that is).

I have had to badger her about this over the phone, as she never mentioned it at the appointment, even when I asked if everything was OK, especially the optic nerve.

Surely, she saw it on the Optomap too?

I really cannot believe how she saw it on a basic exam and the ophthalmologists are disagreeing at the hospital about it with more advanced tests?

Also, I cannot believe she never referred DD for this.

My new optometrist is an old friend and he said she should of definitely been referred for it.

Thank you x

Ugh - how annoying.
It's generally difficult to see drusen in children as they're usually buried in the disc and it's only when they get a bit older you can see sort of sparkly bits (which are calcified bits) and the lumpiness on the disc. It's much easier to see them with a 3D view (so a Volk lens on a slit lamp) as opposed to an Optomap which is a flat 2D view.
I don't know why she didn't mention them.

It's significantly easier to see them on an OCT and it's usually pretty clear if it's drusen or swelling. However, in your daughter's case maybe either it wasn't clear, older machines are not as clear sometimes.

You definitely need another opinion using a different OCT machine. Roll on next monday!

Thank you for replying.

DD is 12 and the optometrist said something along the lines that it is something to do with her age?

Is a volk lens part of the slit lamp or a seperate lens, like they use when you have to look left, upper left, up, down, right, etc? I know they use a small seperate lens and hold it close to the eye whilst doing this.

I'm just upset that one man at the hospital said yes, it is drusen, and the next one said no.

Is it good that nothing has changed on the OCT pictures?

xx

Hi, I have problem with blurred optic margins in left eye of my daughter. Can you please tell me what did you found out ?