Please or to access all these features

Add post

Watch this thread

Save thread

Start a new thread

Flip thread

Hide thread

My feed

Active Unanswered threads

Getting started FAQ's

Unanswered threads Acronyms Talk guidelines

Hide shortcut buttons

Talk

Children's health

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

Flip

1 2 ··· 18 19 20 ··· 39 40

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

SausageAndCash · 23/06/2022 18:03

Oh, OP, what a dreadful punch in the guts. Sending all strength to you, your DH and your little boy.

Start a thread about his particular diagnosis. There will be posters who have detailed knowledge and experience.

And I know there is very little comfort when you are facing a wall of tests and possible pathways, but I remember over 15 years ago, when I was first on MN there was a lovely poster called Droile. Her Ds was found to have a tumour in his brain and the prognosis was very frightening.

Last I heard… he was at Uni and thriving.

My Ds has a friend who had a tumour as a teenager. After surgery and treatment it was as if he had had a stroke for a while… but now you wouldn’t know.

All my fingers are crossed for you.

You did so well, pushing for help. Keep going!

FactualVin · 23/06/2022 18:06

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

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.

TurquoiseDress · 23/06/2022 18:06

Thinking of your son, you & your family

Sending love and strength

TurquoiseDress · 23/06/2022 18:06

Thinking of your son, you & your family

Sending love and strength

Cornishbelle · 23/06/2022 18:08

Thinking of you all I hope there are some good treatment options available can't imagine what you must be going through

Mummyexpat · 23/06/2022 18:10

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.

What a beautifully constructed response…your last paragraph made me well up. X

SergeiL · 23/06/2022 18:19

I am also selling up at @vivariumvivariumsvivaria ’s post.

SergeiL · 23/06/2022 18:19

*welling

Tamarin456 · 23/06/2022 18:21

Can’t imagine what you’re going through but wishing you all the best.

HikingforScenery · 23/06/2022 18:27

So sorry to hear this. Sending you and your family positive vibes 💐💐

KisstheTeapot14 · 23/06/2022 18:28

What @vivariumvivariumsvivaria said - sensible advice. We are your back up team.

So sorry you and your son are going through this.

ArtVandalay · 23/06/2022 18:30

How awful OP. So sorry. Very much hope it’s treatable. Lots of positive stories on here re brain tumours and successful treatment. I have one myself (my husband had one in 2009).

honeybushbunch · 23/06/2022 18:32

Sending all love and best wishes to you, your son and family, OP

FeloniusGru · 23/06/2022 18:34

Sorry to hear this OP. For what it’s worth, my sister was diagnosed with a brain tumour at age 7. It was the size of a tennis ball. She was incredibly poorly for a while. But she is now 27 and doing well 🙂
It will take some time to come to terms with it but when you do, know that it’s not always a bad outcome, treatments are good and kids are tougher than we realise. Thinking of you.

Saz1793 · 23/06/2022 18:35

Sending love x

WonderingWanda · 23/06/2022 18:36

So sorry to hear your news op. Sending much love to you and your family x

ArtVandalay · 23/06/2022 18:37

How awful OP. So sorry. Very much hope it’s treatable. Lots of positive stories on here re brain tumours and successful treatment. I have one myself (my husband had one in 2009).

QuebecBagnet · 23/06/2022 18:38

I’m sorry it was bad news. Hopefully the further tests will tell you more and they can work out a treatment plan quickly.

Katya213 · 23/06/2022 18:40

There are so many stories of survival, please don't think the worst. Sending you lots of love.x

ItsJustASimpleLine · 23/06/2022 18:48

I'm so sorry to hear this hopefully they can get him on a treatment plan soon xx

Windmill47 · 23/06/2022 18:49

Oh I’m so sorry - I’ve been thinking of you and your boy all day. The doctors in this country are truly wonderful and they can do amazing things. I have everything crossed that it is easily treated. Thinking of you 🤍

Newcastlegirl · 23/06/2022 18:50

I’m so sorry that you received this awful news. I’ve been thinking of you today.

You’ve had amazing advice but I just wanted to say I agree with a poster who said take it one step at a time, one appointment at a time. Try not to look too far ahead.

My DD required neurosurgery approx 7 years ago now and the skill of the surgeons and the level of care we received was just wonderful.

I know you won’t feel like it now, but there is hope and your son is in wonderful hands. Sending you lots of love and strength.

Windmill47 · 23/06/2022 18:50

MerryChristmasToYou · 23/06/2022 18:56

Sad to read your update and can't imagine how worried you are. Hope it turns out to be better news for you after the second MRI. Hopes and prayers for your son, your husband and you.

TheRussianDoll · 23/06/2022 18:57

This is devastating for you. I am so dreadfully sorry. Now, a process begins. It’s going to be so hard but knowing, is the first step. Be kind to each other. Be “a mess”. And then, try to be strong.

I, we, will be rooting for your family xx

Flip

1 2 ··· 18 19 20 ··· 39 40

Swipe left for the next trending thread