Active discussions

Are your children’s vaccines up to date?

Set a reminder

Please or to access all these features

Talk
Children's health

Mumsnet doesn't verify the qualifications of users. If you have medical concerns, please consult a healthcare professional.

Original poster

Called back to consultant after DS brain MRI

990 replies

nearlymumof5 · 22/06/2022 18:08

hello, my DS aged 7 has been having nausea, sickness and headaches since November and through lots of pushing managed to get an MRI which was on Monday eve - we were told to expect results in 2 weeks. Today I received a phone call from the paediatric consultants secretary asking myself and hubby to go in tomorrow at noon. I’m terrified. Has anyone else got experience of this? What’s scared me most is that they have asked me to bring hubby. They have requested that we don’t bring DS. I don’t even know what I’m asking for on this thread, maybe someone that has been in a similar situation? Thanks x

OP posts:
Are your children’s vaccines up to date?
Set a reminder
tkwal · 23/06/2022 18:58

I'm so sorry to have read your last update. I'm sure you will be bombarded with lots of information from the medical professionals but if you need help to understand what you've been told or just a friendly voice please contact MacMillan Cancer Care. They were a great support to my husbands family. In the meantime I will hold you and your family in my heart and in my thoughts xx

Purplefoxes · 23/06/2022 19:03

nearlymumof5 · 23/06/2022 14:02

Hello everyone, unfortunately it was bad news. DS has a tumour at the back of his head measuring 2.5cm x 3cm. We are being referred to John Radcliffe and he also needs another mri with contrast dye. I’m feeling numb, hubby is a mess x

Hi OP, sorry to hear of your update. Your intuition was spot on and I'm so sorry and angry for you it's taken a while for them to take this seriously and get an appointment. Thank God you pressed them for the MRI. On the brighter side they have found the cause and he can begin further investigation and treatment now to reduce his symptoms. Hope and pray for you and your DS it is something benign which can be removed with a minimally invasive procedure. On the other side of the coin I know an acquaintance whose son had a neuroblastoma (not sure on stage) and he is now in remission for two years. So even if it turns out to be cancer the outcome can still be positive with the treatments available now. Probably not a lot of comfort to you now I realise when all sorts of things going through your mind. You will get through this. Sending love and hugs xxx

Bigboysmademedoit · 23/06/2022 19:07

So sorry to hear it was bad news - I hope the treatment goes well. Thinking of you and your family x

SerialNameChanger2114 · 23/06/2022 19:08

Hello @nearlymumof5

I work in the next trust along from the JR for BHT, and honestly the reputation that Oxford have for neurology is second to none.

i know it’s hard but I promise that your son will be really well looked after x

SausageAndCash · 23/06/2022 19:09

OP, my Ds had repeated and huge bone surgeries when he was 7.

Keep posting at each stage: I have plenty of experience wrt talking to kids about surgery and hospital, practicalities etc.

You won’t be alone with any of it.

Entschuldigung · 23/06/2022 19:12

vivariumvivariumsvivaria · 23/06/2022 14:17

Practical things to ponder:

He is in a better position than he was last week - you can't treat what isn't diagnosed.

He's in good hands - they found it, they didn't hang about, a plan is coming, so his symptoms will start to improve and he'll feel better shortly.

He has access to the best of treatment, free, at the point of need.

If he has to go into hospital - get a couple of extra long chargers for all the gadgets. You both need a little bag with ear plugs, lip salve, some sort of shawl, cosy socks, a coffee cup to keep coffee hot in and a water bottle. Take a pillow or one of those bean bag head rest things.

It's worth speaking to your GP. You might need some support from them for yourself - you have to learn to cope with a whole bunch of hard and, you will, but something to help you sleep might be wise.

Well done, you saw it, you got him to where he needs to be. They'll take good care of him. We'll help you take good care of you.

That's such a great reply.

Thinking of you and your family @nearlymumof5

KittyKittyKat · 23/06/2022 19:17

Sending positive thoughts to you OP. With very best wishes for your beautiful boy xx

Purplefoxes · 23/06/2022 19:20

nearlymumof5 · 23/06/2022 14:02

Hello everyone, unfortunately it was bad news. DS has a tumour at the back of his head measuring 2.5cm x 3cm. We are being referred to John Radcliffe and he also needs another mri with contrast dye. I’m feeling numb, hubby is a mess x

I forgot to say in my last message that my father in law was treated at the John Radcliffe hospital when he had a large brain aneurysm at 60 (symptoms were just like a stroke). He was on their HDU for a while and we thought things would not turn out well as he had a big bleed However thanks to their amazing care he pulled through and is pretty much back to normal living independently, no obvious issues other than stitches on his head if you were to look in his hair! He has annual check ups all clear, now 65. Often we saw the air ambulance flying to their helipad. They have some of the best neurosurgeons in the country so your son will be in excellent hands. Stay strong you can do this xxx

Bunnyfuller · 23/06/2022 19:21

So sad to read your update op, love and prayers to you all xx

InChocolateWeTrust · 23/06/2022 19:30

Just to say that the JR really is a fantastic hospital and your son really is in the best hands going there.

Everything crossed for quick treatment and good outcomes OP.

Dontjudgeme101 · 23/06/2022 19:31

I am so sorry to hear your update. Sending you positive thought. 💐💐💐💐

Cherrysherbet · 23/06/2022 19:31

So sorry it wasn’t good news op. Sending lots of positive thoughts your way and wishing your son a speedy recovery 💐 x

Mydoghealsmyheart · 23/06/2022 19:33

I’m so sorry to read this. Thinking of you and your precious boy 💐

TrashPanda · 23/06/2022 19:38

I'm very sorry to hear the outcome of the meeting.

My Dad and Mum have both been treated at the JR for different things but both requiring a significant stay. I can't fault the care they both received at all.

There is a Ronald McDonald house in Oxford, if there is travel required for you to get there or other children, it may be worth asking about a referral.

Somuchgoo · 23/06/2022 19:40

FactualVin · 23/06/2022 18:06

In very similar circumstances my wife was diagnosed 4.5 years ago, and whilst it is an ongoing fight to keep our tumour under control, there is a lot more hope as we know a lot more about these brain tumours now than we have ever done in the past.

Not trying to give you any false hope, but there are a lot of long-term survivors I know of. Not all brain tumours are the same, so very important step is to find out the nature of the tumour. If you have private medical cover, use it to expedite the MRI with contrast dye. Get ready for some second opinions too. Seen several instances where inoperable for one Neurosurgeon is operable for another one. PM me should you want to discuss this further or just need a shoulder to lean on. I have built a network of physicians over time that I can share with you too.

Best wishes, chin up, this battle can be won.

Show quote history

You don't need to pay to go private. You don't need to 'speed up' the contrast MRI. The NHS is staggeringly quick to treat children once a brain tumour is diagnosed.

My daughter was diagnosed at lunch time Wednesday, by dinner time we were in a specialist unit (after being blue lighted there) and met by the head Neurosurgeon on arrival. By 10am Thursday morning she had MRI with contrast followed by brain surgery whilst under the same GA.

Her only symptoms were a headache for 3 weeks and starting to get a bit unsteady.

The NHS is slow for many things, but not kids and brain tumours. For this they are like a rocket. They'll have done the scan by the time a private clinic would even have opened the email.

If they are uncertain about their ability for operate on it etc, then absolutely get a second (or third) opinion, but let's see what the doctors say first.

MrPanks · 23/06/2022 19:45

I am so sorry to read your update OP. Will keep you and your DS in my prayers over the coming weeks and months. Big hugs x

Karmabites · 23/06/2022 19:46

I am so sorry to see your update OP. Sending you and your precious little boy strength and positive thoughts. Praying for a speedy recovery 🙏

Katya213 · 23/06/2022 20:12

Somuchgoo · 23/06/2022 19:40

You don't need to pay to go private. You don't need to 'speed up' the contrast MRI. The NHS is staggeringly quick to treat children once a brain tumour is diagnosed.

My daughter was diagnosed at lunch time Wednesday, by dinner time we were in a specialist unit (after being blue lighted there) and met by the head Neurosurgeon on arrival. By 10am Thursday morning she had MRI with contrast followed by brain surgery whilst under the same GA.

Her only symptoms were a headache for 3 weeks and starting to get a bit unsteady.

The NHS is slow for many things, but not kids and brain tumours. For this they are like a rocket. They'll have done the scan by the time a private clinic would even have opened the email.

If they are uncertain about their ability for operate on it etc, then absolutely get a second (or third) opinion, but let's see what the doctors say first.

Show quote history

Gosh, I hope your daughter will be okay🙏

Jellybean27 · 23/06/2022 20:13

So sorry to read your update OP.

Hoping now you have answers, treatment is super fast and effective. Lots of love to you all. X

Bex268 · 23/06/2022 20:19

I’m so sorry to read this. I’ve been thinking about your post and praying it was good news. Your poor family; you all must be so scared. Thank goodness you pushed for that mri - that in itself is amazing. You’ll be his biggest fighter right now and I have a feeling you’ll be amazing and he’ll get the treatment he needs xx

Bellablahhole · 23/06/2022 20:26

I'm so sorry that you received devastating news. My thoughts are with your precious little boy, you and your family. Wishing you all strength x

EggRollsForever · 23/06/2022 20:27

I know every case is unique but my friend's Grandchild was diagnosed with similar at 2. He had surgery, some chemo and some more surgery followed by proton beam therapy. He is now as right as rain.

EggRollsForever · 23/06/2022 20:28

Wishing you all the best!

PurpleFlower1983 · 23/06/2022 20:36

I’m so so sorry to read your update. Thinking about you and your family xx

OwlRock · 23/06/2022 20:38

Op I'm so sorry. I just read your update. I can't imagine what you are going through and I wish I knew what to say to give you a bit of comfort but I hope that somehow everything will be ok. Huge hugs!!