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Children's health

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Original poster

Childs MRI

53 replies

Humanswarm · 06/03/2023 10:25

Hello, could anyone tell me, how long after MRI you had your child's results? I know it may vary from health board to health board, but we are in Wales.
MRI done on Friday, for possible brain tumour. Appointment made for next Monday. Which is apparently very fast at the moment, but tormenting myself with what this means. Another week is a long wait..

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wobblymum1 · 06/03/2023 10:45

sending a big hand hold, waiting is torture ☹️
I don’t have specific experience of MRI for possible brain tumour but have experience of waiting for results for some scary things and my understanding is that if something was found to be urgent you wouldn’t be kept waiting for another week especially with children, they would have them admitted by the evening of the day something was found.
do let us know how you get on x

Original poster
Humanswarm · 06/03/2023 13:29

Thanks so much for your reply. It's is torture you're right. He was admitted last week, on Wednesday, had MRI on Friday and he is on home leave, so still technically an inpatient. I thought we'd get results same day too. But the hospital today were insistent that a week is tremendously fast at the moment and most aren't being read for around 4-8 weeks due to extreme back log. So, as much as I want to be relived that we had no immediate news, I'm still worried sick 😕

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MargaretThursday · 06/03/2023 17:32

Honestly, the longer it is the less likely there is to be a problem. Someone I know arrived home after the ambulance sent to pick them up after an MRI and they were in surgery that evening.

I would suspect that they'll do an initial look, which will pick up most urgent checks. It'll be the checking thoroughly the nitty gritty areas that will take a bit longer, but they're less likely to spot anything.

It is hard to wait, but no news is good news.

Original poster
Humanswarm · 06/03/2023 18:03

Thank you! That's really hopeful!
It will be a such a relief to find nothing sinister, but I fear, regardless there's a long way to go for us...we just want to know what's happening and how we can help him.

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flightless55 · 06/03/2023 18:07

We had an MRI for a possible brain tumour early February and had results 2 weeks later - were in the SW

Thankfully it was something else which we can work with

Sending love for this stressful time

SonnySideDown · 06/03/2023 18:15

My friend had a brain tumour and was told this on the same day as her scan. The radiographers performing the scan can spot obvious things like tumours that then require urgent reporting and would flag them as such.

Original poster
Humanswarm · 06/03/2023 19:12

@flightless55 thank you, I'm glad your news was good! Such a worrying time though!

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Original poster
Humanswarm · 06/03/2023 19:13

@SonnySideDown thank you! I thought this the case, it's reassuring to hear that. Something is definitely very wrong, I just wish I knew what!

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Cuckfancer · 06/03/2023 19:17

What are your DCs symptoms? What was the result of their neurological exam? We were told within 2 hours of the MRI. I know 2 other parents who were told the same day. I know another parent who was told the next day ( I think they could see it but waited to get it signed off by the senior). All these were malignant immediately life threatening tumours. Judging by our experiences, it's possible the wait could mean you have time...so even if a tumour, could be something less dangerous/ slower growing. Hope I'm right. If it is a tumour, it will feel slightly better to know what it is and have a plan to sort it.

WorriedMillie · 06/03/2023 19:28

IME, anything urgent gets flagged immediately and reported on as a matter of urgency, so you’d hear on the same day, or very soon after

The uncertainty is horrible though, I hope you get some answers soon 🌸

gogohmm · 06/03/2023 19:35

We got the results (nothing) two weeks later in the post. I was told if their was even a slight suspicion they would have called us within 48-72 hours

Somuchgoo · 06/03/2023 19:37

My 2yo had a CT scan to rule out a brain tumour.

I was told the results within 20 minutes and she was blue lighted to a different hospital and had surgery the next day.

Thankfully lab analysis showed it was low grade so the best of a horrible thing, and it probably won't kill her.

Other people i know on here whose kids have been diagnosed with brain tumors have found out with similar speed.

I'm not saying it's not a tumour but I'd be slightly reassured that it's not something that think it's ultra urgent.

Best of luck with your little one x

Fordian · 06/03/2023 20:09

SonnySideDown · 06/03/2023 18:15

My friend had a brain tumour and was told this on the same day as her scan. The radiographers performing the scan can spot obvious things like tumours that then require urgent reporting and would flag them as such.

That's good.

Thank you for the rare acknowledgment that the MR radiographers know what they're looking at. I'd flag, flag, flag anything untoward I saw in a paediatric head scan!

Original poster
Humanswarm · 06/03/2023 20:18

@Cuckfancer thanks for your response. I'm so sorry you've all had to go through that.
My dc is 7. His symptoms are a change of vision, so, he had multiple episodes a day, starting 3 weeks ago, where his vision was 'stretched', these episodes were deeply traumatic and no apparent triggers for them, this has evolved to not being able to look at anyone as heads appear smaller ( dc's words). This all accompanied by headaches, and pain on his cheek bones. Refusal to close his eyes due to pain. He has gone from sleeping from 8pm ish every night to not sleeping until 11pm ish when he essentially is so tired he can't physically keep his eyes open.
There are other things smaller things too...
Usual tests done for diabetes, any infection, eyes checked etc.
Admitted on Wednesday, MRI Friday afternoon.
I swing between something organic and possibly a neuropsychiatric thing? I can't think straight though..

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Original poster
Humanswarm · 06/03/2023 20:20

Should also say he has a constant headache, which seems bearable, which at times morphs into something really painful..this has all been going on for almost 4 weeks. He's not in school as off sick. It took 3 trips to GP to get him seen properly last Wednesday

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Whywere · 06/03/2023 20:22

I know you’re not here for a diagnosis but it sounds quite a lot like this www.everydayhealth.com/migraine/interesting-facts-about-alice-in-wonderland-syndrome/

Original poster
Humanswarm · 06/03/2023 20:25

@Whywere yes! I had thought this and raised it with consultant! Seemed to be dismissed, some things I read it sounds similar, others not so much. I will raise it again! Thanks so much for replying

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TheWormThatTurned · 06/03/2023 20:26

My child had a brain tumour and we were told within hours and were transported to the nearest specialist hospital. The radiologist was able to pick up the tumour.
I hope that gives you some comfort, I'm sure the wait is agonizing, but in my experience it's a good sign.

Original poster
Humanswarm · 06/03/2023 20:33

@TheWormThatTurned thank you so much. I'm so sorry that happened to you. X

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Cuckfancer · 06/03/2023 21:29

Bless him that sounds awful for you all. I really hope it's something they can identify and treat. I would say most of the families I have met whose children have malignant brain tumours had things like persistent vomiting, changes to balance or coordination, vision changes but things like squint or double vision, things opticians can easily 'see'.

EqualFranknessWithYourLadyship · 06/03/2023 22:17

You have my solidarity Flowers I wish I could give you more.

I called my doctor to say I couldn’t cope/was going mad/needed sleeping pills, etc (we had a week’s wait for the MRI - that was the worst period).

The doctor said it was better to focus on practical plans eg what would be needed to support a long stay in hospital/in another town.

looking back it was good advice.
my other advice OP is to be careful driving right now - I look back now and my crazy drive across the country was a mistake.

get any weird noises in your car checked/get air pressure sorted in the tyres. Practical stuff - you won’t be noticing ordinary hazards like car problems so well right now. You’ll be doing stuff by rote but whatever these results bring you you still have to service your boiler and not lock yourself out, etc.

Original poster
Humanswarm · 06/03/2023 22:59

@EqualFranknessWithYourLadyship thanks so much, that's all real practical advice. I wouldn't have even contemplated. I'm like a zombie. We're in limbo. I hurt for my ds. I want to make him better. But, until we know more, I can't do a thing. And I'm his fixer. I make everything better. That's my job.

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EqualFranknessWithYourLadyship · 07/03/2023 18:51

The other utterly bizarre thing i did during this period was have a pilates lesson. Obviously it was not a normal lesson. The teacher was unfazed and showed me how to lift my sternum (whilst letting the ribs relax). I almost laughed - it was miraculous the feeling of one elephant getting off the pile of elephants.
Again it was weirdly useful and practical -all those metaphors about being weighed down and standing up to things and "facing" things are so rooted in the body.

To use your language, you can actively prepare for doing your job. I think that's different from ruminating.

Keep checking in here xxx

Original poster
Humanswarm · 07/03/2023 19:55

@EqualFranknessWithYourLadyship thanks again. Your posts have made me smile. And, utterly bizarre you should write that, as after a couple of very sluggish months and a distinct lack of self care, this morning I did half an hour yoga. It helped.
Just half an hour of self preservation.
Do you feel comfortable talking about what happened after?

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Somuchgoo · 07/03/2023 20:11

Oh, and for goodness sake pack a just in case bag which includes comfy pants etc. We ended up staying 7 weeks in hospital, and mostly living off clothes my husband quickly shoved in a bag and Tesco multibuys!

The lack of urgency is probably a very good thing, but they are definitely things you can do to make life easier if it is something requiring a substantial stay. However, Amazon deliver to most hospitals, so there's no need to do too much packing now.

Oh, some bulk cooking might be useful. Since her tumour, my little one has been in and out of hospital a few times, and I always keep some extra bulk cooking dishes frozen as they are nicer than the shop ready meals. It also means if he gets worse at home then you've not got to think about cooking.

Best of luck.