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Original poster

Is this likely to be a tumour? Or something else… or nothing?

37 replies

Pumpernickelsoup · 15/02/2022 23:22

I could really do with any experience or advice from anybody who’s had similar, I’m worrying quite a bit and I do get anxious about things but I’m not sure if this is me just looking into things too much or not.
I have a 15, nearly 16 year old son who I’m worried about right now.
He has been getting headaches and backache in the centre of his back, between his shoulder blades but a bit lower and sometimes it goes down to his lower back since roughly the summer last year.
I will often get calls from school saying he’s in pain with a headache and nauseous and paracetamol often doesn’t resolve them. He wakes up with them a fair bit but they can also come on later in the day. He says they feel a bit better when he lays down flat and closes his eyes.
We had a doctor appointment a couple of months ago for these issues as they weren’t resolving and the doctor put it down to the fact he likes to game and uses a chrome book at school.
I didn’t think the doctor could be wrong but the headaches haven’t resolved (and the back pain is still present) so I booked an opticians appointment as he was fairly due just to check if it’s his eyes that could be causing the headaches.
This appointment was last week and the optician noticed that one pupil is now larger than the other and is not responding to light properly.
He referred us to the GP as an urgent referral and we were seen today.
The GP sent us straight to the child assessment unit at the hospital where he saw two nurses one after the other.
Amongst the words used were “RAPD left eye”, “margin blurred and Ill defined margin” and “urgent opthamalogical” which I have looked up online and have really worried me.
We got sent home from the hospital today but have to be back first thing in the morning for an appointment to examine his eyes at the hospital and from there it will be decided if he needs an urgent head scan tomorrow or if he will be on a 4-6 week wait but either way he needs a head scan.
The only other thing I’m concerned about is that he is VERY tired allot of the time and is low on energy regularly but I’d just put this down to him struggling to sleep and being a teenager with a school, social and family life.
Has anybody else had this sort of experience and what has it turned out to be?

OP posts:
Original poster
Pumpernickelsoup · 15/02/2022 23:32

Bumping as could really do with reassuring experiences.

OP posts:
Woahbodyforrrrm · 15/02/2022 23:40

Please push for an urgent referral for a head scan. Do not let them put you on a waiting list. These symptoms should not be sweepingly passed off as other things without thorough investigation. It is unlikely to be anything sinister but the GP must do everything in their power to rule serious things out.

Take a look at the Head Smart campaign, print it off and go to your next appointment armed with it. A brain tumour would be the worst case scenario (and is statistically unlikely to be the issue with your son) but it is better to be safe then sorry.

www.headsmart.org.uk

I was diagnosed with a brain tumour 7 years ago. My symptoms were not like your sons but over the years I came across the Head start campaign which was set up as so many young people were being misdiagnosed when a simple scan would show one way or another for sure.

I can imagine how worried you are and I debated whether to post this as I wouldn't want to stress you out any further but as a mum, I felt I had to share this with you.

Sending you lots of love and I hope that you get to the bottom of what's making your son feel this way soon and that it's nothing serious 🙏🏼💐

Original poster
Pumpernickelsoup · 16/02/2022 00:30

Thank you very much for your reply and I’m sorry that you have been through the experience of a diagnosed brain tumour.
We are back in the hospital in the morning and he will have a head scan they have said but tomorrows specialist will decide if it’s to be urgently done tomorrow or within 4-6 weeks.
I’d not considered anything like this until the optician spotted abnormalities in his left eye last week and urgently referred us to the GP. I thought that it was just that, a gp appointment and that I was being silly worrying but being sent to the hospital today and hearing all of these words has really worried me.
The first nurse also noted that he drinks allot of water and squash as something which I have just seen on the teen list but he has always liked to stay hydrated.
The second nurse said that she is less concerned as he has no other neurological symptoms such as loss of strength in any limbs or falling over etc but that the scan will be to rule out “tumours in the head” as this is a concern.
I’m trying to be optimistic and not worry.
The appointment is in the morning so I suppose I should really just get to sleep but I’m struggling to with worry!
I hope they do the head scan tomorrow as I know I’ll worry so much for the 4-6 weeks otherwise but if he does have to have it tomorrow it’s because it’s urgently needed which will be even more worrying!
I think my main concern is that one pupil is bigger than the other now and is not responding properly to light, I’d not thought anything serious of the headaches and back pain.
I hope you’re healthy and happy now Flowers

OP posts:
Gosports · 16/02/2022 08:06

Hi Op, I don’t have any experience of the eye symptoms but I was sent for a head mri because of a suspected brain tumour. My GP said he was 99% certain I didn’t have one but wanted to be sure, as he said patients who he’d seen with tumours had fits and numbness. So assuming your DS hasn’t had those, it’s hopefully something else. Best of luck today.

StrawberrySanta · 16/02/2022 08:27

Hope the hospital appointment goes well today

Roselilly36 · 16/02/2022 08:29

Is your DS up to date with his sight tests OP? I used to work in an opticians, often optometrists are the first to spot a tumour and refer these and other conditions too. Good that it’s being checked out. Very best wishes.

indecisivewoman81 · 16/02/2022 08:33

I hope everything goes ok today for you both

LuckyWithMyLot · 16/02/2022 08:38

I can imagine you're concerned OP but hopefully it's just a matter of doctors doing their job & ruling things out and there's nothing sinister going on. Crossing my fingers for good news today.

Malibuismysecrethome · 16/02/2022 09:07

Sending best wishes for you and your son.

BuddhaForMary · 16/02/2022 09:14

@Roselilly36

Is your DS up to date with his sight tests OP? I used to work in an opticians, often optometrists are the first to spot a tumour and refer these and other conditions too. Good that it’s being checked out. Very best wishes.
OP said she'd taken him to the optician and that's who referred him to the GP.

Hope all goes well today, I've got a DD with recurrent headaches and dizziness and it worries me something is being overlooked. Her eyesight has altered recently so I'm hoping the new glasses sort this out. Otherwise it's back to the GP and start making some demands for proper investigation.

Electriq · 16/02/2022 09:16

Best of luck for today Op

CushionSpiral · 16/02/2022 09:18

Hope today goes well and they do the scan quicker to rule out anything bad. Sadly often these things start out with non specific symptoms and until they progress it’s harder to see what the cause is.
Opticians are great at picking stuff up.

Roselilly36 · 16/02/2022 09:53

@BuddhaForMary apologies, you are right, should have read post throughly, just wanting to highlight how important keeping up to date with sight test are for everyone, to maintain good health, not just for a change in prescription for specs etc. A GP’ will always ask if a child/adult is presenting with headaches, if they have been seen by an Optom. Best to see Optom first, as they have specialist equipment to check the health of the eye, optic nerve etc, then the GP. I used to send over urgent referrals for our Optoms the most concerning ones were often seen that day or the next, this was pre pandemic though.

Wagsandclaws · 16/02/2022 10:01

The optician referred my ds for an urgent scan and like you I was worried sick.

Luckily it was ok but I know how worried you must be. Keeping everything crossed that there is a benign explanation for you ds symptoms Op.

BuddhaForMary · 16/02/2022 10:22

@Roselilly36 I agree the optician is a great port of call for headaches, I've read of so many occasions where they've been the first to flag up potentially serious issues.

Hugoslavia · 16/02/2022 11:03

Just to say that I can only imagine how worrying this is for you and that I hope that everything goes well for you today.

Hugoslavia · 16/02/2022 11:21

As a lay person with no medical experience whatsoever, I wonder whether there is increased pressure or something like hypertension if it is affecting the spine, head and eyes. I'm wondering if he has had any infections or viruses? Either way I would be pushing for an urgent scan if only for reassurance.

Somethingsnappy · 16/02/2022 11:29

I hope it all goes well today OP x

Oldandcobwebby · 16/02/2022 12:31

I cannot imagine how worrying this must be for you and your son, OP. I sincerely hope you get some reassuring news today and that he is soon on the road to a full recovery.

Hugoslavia · 16/02/2022 14:23

Hope that all is going ok OP. X

MrsMingech · 16/02/2022 15:29

That's really scary for you both. I hope it's something that is resolved easily.

ChoiceMummy · 16/02/2022 18:15

How did your son get on today @Pumpernickelsoup?

OurWorldIsChanging · 16/02/2022 18:20

Hope it went well op.

Original poster
Pumpernickelsoup · 16/02/2022 18:58

Thank you all,
Just an update… everything is fine! I’m so relieved!
They Did allot of different eye examinations this morning and took some detailed photography of the optic nerves and the full insides of his eyes and they have said that there is nothing that looks unusual and they’re no longer concerned!
They sent us back to the paediatric department after the eye department to see what they wanted to do but they were happy to discharge him as everything looked so healthy in the imaging!
They’ve said it’s just one of those things that sometimes a pupil can become larger than the other but they’re not concerned at the hospital like they were at the optician about his pupil reacting to light and have said it responds well in their tests.
They’ve put the headaches down to slight long sightedness which he will have glasses for for working on his chrome book and reading etc and the backache because he’s grown allot and is 6 foot tall!
I expect the tiredness is just a part of being a nearly 16 year old with a busy life!
I’m so so relieved, I was so worried!
I should have just slept and waited for today rather than posting but my mind wouldn’t let me rest!
Really appreciate the messages and the well wishes though!

OP posts:
BuddhaForMary · 16/02/2022 19:02

Lovely update. I'm relieved on your behalf!