Update - not good news, optic disc drusen

[Wilburis]

Hi

My daughter has been told she has this.

Does anyone know anything about it?

I'm in shock and having a wobble that there is something wrong with her optic nerves.

Thank you

[ErinKC]

I've never heard of this, but I just googled it and it doesn't seem to be serious at all. It sounds like it's small protein deposits but that they don't typically cause any problems or vision loss.

[Gary A]

There’s nothing wrong with your daughters optic nerves, Drusen are simply small deposits of protein that are utterly harmless. Over time, they can cause small defects in peripheral vision, but generally these defects are so slight they aren’t noticeable.

You’re working yourself up over a relatively common and harmless condition.

[Wilburis]

Thank you both.

I'm just in a tizz as she's been suffering with migraines. (All our family do).

So I've put blurred optic nerves together with migraines and come up with brain tumours, especially as the headache starts in the mornings usually.

We saw the consultant at the ophthalmology department and she had tests and an ultrasound. He did say there is no evidence of pressure from the brain, swelling, etc but then offered an MRI?

We have a follow up with the paediatric ophthalmologist in the new year. He said he would pass on his findings and get an appointment with the paediatric doctor, so I'm hoping that the paediatric doctor has looked at my daughter's note and would of called us in earlier if it was urgent?

I just can't get my head around why he would offer an MRI.

[ErinKC]

If your family all has migraines that's certainly why your daughter does. I didn't see anything to do with migraines or the brain, it's just a benign protein deposit that's usually only diagnosed during routine eye exams. I think if you're no satisfied with the cause of migraines you can do an MRI, they were probably just being thorough. I get all of my migraines in the morning because mine are caused by grinding my teeth at night - that could be something to look into.

[Wilburis]

Oh, thank you Erin.

We always used to laugh that it sounds like she eats apple in her sleep, she does make funny noises and her head is always off the pillow too.

Husband and elder daughter suffer terribly with migraines.

The strange thing is that her migraines have always been during times when there is no school:shrug:

[Gary A]

Thank you both.

I'm just in a tizz as she's been suffering with migraines. (All our family do).

So I've put blurred optic nerves together with migraines and come up with brain tumours, especially as the headache starts in the mornings usually.

We saw the consultant at the ophthalmology department and she had tests and an ultrasound. He did say there is no evidence of pressure from the brain, swelling, etc but then offered an MRI?

We have a follow up with the paediatric ophthalmologist in the new year. He said he would pass on his findings and get an appointment with the paediatric doctor, so I'm hoping that the paediatric doctor has looked at my daughter's note and would of called us in earlier if it was urgent?

I just can't get my head around why he would offer an MRI.

A consultant ophthalmologist would absolutely know the difference between Papilledema, swollen optic discs due to increased intracranial pressure, and optic nerve Drusen.

Perhaps the MRI was offered as you had reported migraines.

[Wilburis]

Thank you Gary A.

As the consultant said there was no evidence of any pressure coming from the brain - that is positive, isn't it?

The optometrist who referred is actually a friend of mine and he knows I worry about everything.

We have seen the GP about the migraines and she said migraines.

I know my husband gets a migraine if he goes to bed 30 minutes later than usual or has a lie in.



Oh, what is the difference between "Papilledema, swollen optic discs due to increased intracranial pressure?" Or is that the medical word for it?

[NancyW]

My friend's son was diagnosed with drusen when he was little, he's 26 now and has never had any issues.

[MyNameIsTerry]

As Gary has said a specialist in that area is goign to have made all of these considerations whether they have voiced them or not. With this being a child, and an anxious parent might be a factor, they may be offering a tick box check just to show there is nothing there when they expect there won't be. Put it another way - they would absolutely just get on with the MRI if they thought there was something to find, wouldn't they? :winks:

If night grinding is a factor then there are things you can do for this. I had bruxism due to new meds for about 6 months and it was always the night for me as I would wake with it. My dentist found evidence of grinding on my back teeth. He told me to do an exercise before bedtime to relax the jaw muscles.

1. With mouth closed touch tongue to roof of mouth.
2. Open mouth wide.
3. Close mouth.

The tongue stays on the roof of the mouth throughout and you repeat it a few times before bed. Obviously this is something you will get advice on but I just wanted to show how sometimes there can be some simple fixes if it's a night time thing like Erin finds.

[Wilburis]

Hi

My daughter had been under the eye clinic at the local hospital since December.

She had blurred and elevated optic discs, headaches that were coming once a month, if that.

OCT scans did not show any evidence of any intercranial pressure at all.

We were told she had drusen, then small optic discs until we finally had an MRI.

She had severe hydrocephalus and she was rushed up to Kings College Hospital, in London.

She had emergency surgery, an endoscopic third ventriculostomy, and has a tectal glioma, which was causing an obstruction to one of the ventricles.

I'm truly devastated.

Not even the neurosurgeons could believe how well she was - they said with the amount of water in her brain, she should of been falling unconscious.

:weep::weep:

[nomorepanic]

Hi

This is just a courtesy reply to let you know that your thread was merged with another of your threads.

Please when posting on similar topics add it onto your previous post rather than starting a new one.

It is nothing personal it is just to make it easier for people to follow your story and to give you advice as a whole.

[pray4me]

I'm so sorry to hear about your family's ordeal. My son recently had a health scare so I know how you must feel. How is your daughter doing now? I know it's hard but try and take care of yourself as well.

[Scass]

I don’t really know what any of this means, but I hope she’s on the mend now as it sounds quite a scary time.

[Wilburis]

Thank you.

Scass - Basically she has a brain tumour which was blocking fluid from leaving her brain, causing hydrocephalus. She had had a hole made in the bottom of her brain to let the fluid drain out. They don't know if the tumour is benign or malignant as it is in the mid brain - way to dangerous to biopsy, so she has to have an MRI every 3 months.

[Scass]

That’s terrifying for you all. I hope that you get good news.