Page 38 | Called back to consultant after DS brain MRI

nearlymumof5 · 2022-06-22T17:08:10+00:00

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

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ThirtyThreeTrees · 28/06/2022 17:50

A mother's instinct is rarely wrong. Fair play to you for fighting his corner and pushing for the MRI. The significance of your actions will hit you more in the coming days - fair play for pushing.

Glad you hear all is going as well as an be at the moment. Hope the worst of it is over, they got it all and his recovery can begin.

Cudz · 28/06/2022 17:58

Absolutely wonderful updates OP and so pleased to hear that you are considering your own health and wellbeing too by getting some much needed sleep. Love that he was being a silly billy too i bet that gave you a much needed smile. Please keep us updated, we are all sending you all so much love xx

Nocutenamesleft · 28/06/2022 18:16

nearlymumof5 · 24/06/2022 00:13

I just knew, I knew deep down and felt so silly for pushing but I’m so glad I did. The consultant today was almost praising himself for getting a diagnosis relatively quickly (4 weeks since we had our first appointment with him) forgetting the fact that I had to loose my shit for him to change his referral from routine to urgent for the mri, otherwise we would have had another 6-8 weeks to wait for the scan … sorry I’m venting and probably not making any sense

Well done. My friends daughter had an eye exam. Whilst there they told her to go straight to the eye hospital because her optic nerve was swollen

the consultant thought it useless and didn’t want to do an MRI. My friend pushed and pushed but got nowhere and my friend left. Whilst she was gone apparently the nurse went on and on at the consultant about the eye exam and felt that he should of listened to my friend about her daughter

turns out she had a DIPG tumour. She had been right all along

Nocutenamesleft · 28/06/2022 18:17

nearlymumof5 · 24/06/2022 00:13

I just knew, I knew deep down and felt so silly for pushing but I’m so glad I did. The consultant today was almost praising himself for getting a diagnosis relatively quickly (4 weeks since we had our first appointment with him) forgetting the fact that I had to loose my shit for him to change his referral from routine to urgent for the mri, otherwise we would have had another 6-8 weeks to wait for the scan … sorry I’m venting and probably not making any sense

Well done. My friends daughter had an eye exam. Whilst there they told her to go straight to the eye hospital because her optic nerve was swollen

the consultant thought it useless and didn’t want to do an MRI. My friend pushed and pushed but got nowhere and my friend left. Whilst she was gone apparently the nurse went on and on at the consultant about the eye exam and felt that he should of listened to my friend about her daughter

turns out she had a DIPG tumour. She had been right all along

Heretochill · 28/06/2022 18:19

So happy for you, I can’t imagine what the past week has been like for your family. Wishing your son a very speedy recovery ❤️

concernedreinsurance · 28/06/2022 18:21

Nocutenamesleft crikey that's a brave nurse.

this has just happened to us too only it was something outside the brain but inside the skull (still life-threatening though). Opticians save lives - who knew?

devonianBiatch · 28/06/2022 18:40

I'm delighted he's had surgery and is recovering. I'll keep everything crossed!

devonianBiatch · 28/06/2022 18:41

I'm delighted he's had surgery and is recovering. I'll keep everything crossed!

Somuchgoo · 28/06/2022 18:43

Yep, during our time on neuro, about half the other kinds with brain tumours were diagnosed following an opticians appointment. Some had been struggling to get their GP to take them seriously for far too long 😢

@Nocutenamesleft I'm sorry to hear of your friends daughter. DIPG is an absolute bastard to put it mildly. That's very sad.

Theonlyoneiknow · 28/06/2022 18:56

Glad surgery went well OP, sending love and hope for good pathology results xx

nocoolnamesleft · 28/06/2022 18:57

They got all of it?!?! Oh, wow. I know you need to know the pathology, but that is the best start he could have at this point.

stopringingme · 28/06/2022 19:02

I have been watching your updates and thinking of you and your young man, what a relief that the operation went so well.

Hopefully he will have quick recovery and you will be taking him home soon. 💐

Letsgoforaskip · 28/06/2022 19:03

Such a great update. You have certainly had a terrifying week! I am in awe of your strength and your love shines through your posts. Wishing all of you the very best and some rest ❤️

Muchtoomuchtodo · 28/06/2022 19:08

So lovely to read that the op went well, the scan is positive and your ds seems to be recovering well.
thank you for taking the time to share your news with us.
Still sending you all lots of love xx

uncomfortablydumb53 · 28/06/2022 19:15

What an Amazing update!
Sending you all love and strength( and rest)

uncomfortablydumb53 · 28/06/2022 19:15

What an Amazing update!
Sending you all love and strength( and rest)

Nocutenamesleft · 28/06/2022 19:20

Somuchgoo · 28/06/2022 18:43

Yep, during our time on neuro, about half the other kinds with brain tumours were diagnosed following an opticians appointment. Some had been struggling to get their GP to take them seriously for far too long 😢

@Nocutenamesleft I'm sorry to hear of your friends daughter. DIPG is an absolute bastard to put it mildly. That's very sad.

Thank you

Yes. Her life was not in vain though. She did some phenomenal stuff for a 15 yr old and she'll never be forgotten xx

Nocutenamesleft · 28/06/2022 19:22

concernedreinsurance · 28/06/2022 18:21

Nocutenamesleft crikey that's a brave nurse.

this has just happened to us too only it was something outside the brain but inside the skull (still life-threatening though). Opticians save lives - who knew?

I know. She died only 15 months later. So had the nurse not have pushed it, her symptoms would of been pushed back for something else. Like nausea etc

it would of only been when the blindness and deafness or loss of balance came in which was about 3 months before she died.

so small miracles really

JuneJubilee · 28/06/2022 19:26

Brilliant updates!!

He'll be up and about driving you mad very soon!!

it's bloody scary, but hopefully this is the end of it!! 🤞🏼For the results!!

Pixie2015 · 28/06/2022 19:26

He is an absolute star by the way he handled hospital and his anti sickness drugs - hope with every hour you see an improvement- take care and rest when you can Xbox

Pixie2015 · 28/06/2022 19:27

He is an absolute star by the way he handled hospital and his anti sickness drugs - hope with every hour you see an improvement- take care and rest when you can Xbox

JellyBellyNelly · 28/06/2022 19:28

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JellyBellyNelly · 28/06/2022 19:33

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Sorry. I had meant to report this post (along with the others by the same poster) instead of replying to it here.

Bellablahhole · 28/06/2022 19:38

What a fabulous update. Your little boy is awesome - what a treasure! Hoping it's onwards and upwards for you all moving forwards ❤

Assistanttotheregionalmanager · 28/06/2022 19:57

Incredible update. So delighted for you all.