Any radiologists or neuros? Extremely worried

SallyJupiter · 2026-08-08T19:48:51+00:00

Hi everyone, Posting in AIBU for traffic. Are there any radiologists or neuro folks here who would be happy to answer some questions and clarify some points for me on a recent MRI my husband had please? I'm absolutely spiralling as they found something in his brain. I have his permission to post about this btw. Many thanks in advance.

StandFirm · 27/08/2026 09:33

SallyJupiter · 27/08/2026 08:57

Thank you so much.

We're all mostly doing okay. Just this constant background anxiety until the next scan.

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So sorry to hear you are going through this OP. The road to diagnosis is incredibly hard. I am 9 weeks post neurosurgery and (fingers crossed) entirely symptom free now. Feel free to DM me as I navigated the neurology referral to surgery path very recently.

McGregor33 · 27/08/2026 09:06

SallyJupiter · 27/08/2026 08:57

Thank you so much.

We're all mostly doing okay. Just this constant background anxiety until the next scan.

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Hoping to give you some reassurance on the MRI and apologies if I’ve missed anything as I haven’t rtt.

My daughters flagged several things between her brain and her spine, everytime I read up on some of the things it was pretty much grim results. We got her report by complete fluke so hadn’t spoke to any doctor.

She is still waiting to be assessed by the neurosurgeons however, a lot of what was on the MRI isn’t actually impacting her in the way they’d have expected it to and it isn’t as serious as chat gpt or even google broke it down.

Original poster

SallyJupiter · 27/08/2026 08:57

WorkingItOutAsIGo · 26/08/2026 20:13

Just checking back in on you and sending love at this difficult time.

Thank you so much.

We're all mostly doing okay. Just this constant background anxiety until the next scan.

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Original poster

SallyJupiter · 27/08/2026 08:54

oustedbymymate · 23/08/2026 22:46

We saw the on call neurosurgeon 45 mins after the mri. It was 8pm on a Sunday night. They literally were like you need to come with us now. The neurosurgeon was fairly confident it was benign and a meningioma but didn’t fully commit until he operated and we had the histology report back.

im sorry you’re going through this you must be worried sick but my only experience the fact they haven’t ’jumped On it’ immediately is a good thing.

mum is pretty much back to normal. She had a rough recovery but is back to normal now. She did have symptoms but the gp said it was depression. I thought it was dementia! The neuro team were shocked when we told them what the gp said.

How amazing that your Mum is back to normal. I am so happy for you all 🥰.

We have a camping trip with friends booked soon and I've had this horrible feeling that something bad is going to happen since we initially booked it months ago. At the time I thought it would be that the weather would spoil it but now I'm worried that something will happen to my husband. Silly I know.

The neurosurgeon we saw at Plymouth was far more cautious than the ones at Bristol in terms of not wanting to jump to a biopsy straight away. Interesting and also slightly concerning how differently different drs approach things 😅.

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WorkingItOutAsIGo · 26/08/2026 20:13

Just checking back in on you and sending love at this difficult time.

oustedbymymate · 23/08/2026 22:46

We saw the on call neurosurgeon 45 mins after the mri. It was 8pm on a Sunday night. They literally were like you need to come with us now. The neurosurgeon was fairly confident it was benign and a meningioma but didn’t fully commit until he operated and we had the histology report back.

im sorry you’re going through this you must be worried sick but my only experience the fact they haven’t ’jumped On it’ immediately is a good thing.

mum is pretty much back to normal. She had a rough recovery but is back to normal now. She did have symptoms but the gp said it was depression. I thought it was dementia! The neuro team were shocked when we told them what the gp said.

Original poster

SallyJupiter · 22/08/2026 15:01

oustedbymymate · 21/08/2026 22:49

My mum had a giant meningioma diagonosed by MRI. The GP told her she was depressed for two years. Don’t get me started. I do have a whole thread on it on here….

she finally went for the MRI and was met by in all neuro surgeon 45 mins later. She had it removed 5 days later it was in her left frontal lobe and the side of my fist. She has a made a full recovery.

sending you lots of love

So they knew it was a meningioma just from the MRI? They're not sure what my husband's is but don't want to do a biopsy unless it grows, so he'll be having a rescan in 4-6 weeks time. I have been having nightmares about the results in advance.

His tumour is in the suprachiasmatic space, above where the optic nerves cross and near the hypothalamus and 3rd ventricle. A tricky spot and a very rare place to get a tumour. We're both only young (I'm 36 and he's 44) and we feel a bit robbed. It's kind of dumb though because he has zero symptoms so you'd think we'd be reassured by that but I'm constantly looking over my shoulder expecting it to change. The lack of symptoms points to it being benign too but I think it's the fact that it's there at all that sucks.

Does your mother have any deficits at all after having her tumour removed? I'm so happy and grateful to hear a positive story so thank you for commenting.

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oustedbymymate · 21/08/2026 22:49

My mum had a giant meningioma diagonosed by MRI. The GP told her she was depressed for two years. Don’t get me started. I do have a whole thread on it on here….

she finally went for the MRI and was met by in all neuro surgeon 45 mins later. She had it removed 5 days later it was in her left frontal lobe and the side of my fist. She has a made a full recovery.

sending you lots of love

MarthaLovesLaughing · 21/08/2026 22:35

What a difficult time for you. Sending love ❤️

Original poster

SallyJupiter · 21/08/2026 19:49

MarthaLovesLaughing · 21/08/2026 18:12

How did it go @SallyJupiter?

As well as it could have really. The consultant said they aren't sure what it is but agrees that it looks benign. He wants to do another scan in 4 weeks time to see if it's grown at all and then if it has, they'd do a biopsy to see what it is. If it's the same size then it will just be monitored at regular intervals. It's in a very tricky place in the brain. The consultant said tumours in this area are rare. That on top of the fact that brain tumours in general already being very rare is just shit really.

My husband still has no symptoms so that's good, although I cannot stop the fear of that changing. I had a nightmare about it actually a few nights ago.

I felt really angry about it today. I can't believe this is happening. I'm outwardly being strong but I actually just want to scream and hit things.

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MarthaLovesLaughing · 21/08/2026 18:12

How did it go @SallyJupiter?

StormGazing · 20/08/2026 12:55

Good luck for tomorrow - it must be hell waiting 😣

Original poster

SallyJupiter · 20/08/2026 12:52

MarthaLovesLaughing · 18/08/2026 17:22

How are you doing @SallyJupiter?

Up and down tbh. I have days where I feel really positive and hopeful and days where I really question what this life is all about. My husband has finally been given a consultation appointment for tomorrow and we are both in bits but trying to keep things light for our children. My husband is the most depressed I have ever seen him and it's breaking my heart.

Thank you so much for checking in on me.

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MarthaLovesLaughing · 18/08/2026 17:22

How are you doing @SallyJupiter?

Original poster

SallyJupiter · 12/08/2026 17:08

SunshineOnARainyLeith · 12/08/2026 16:18

So sorry you are going through this, I don't have any helpful advice but I am thinking of you. Xxx

Thank you so much❤️

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SunshineOnARainyLeith · 12/08/2026 16:18

So sorry you are going through this, I don't have any helpful advice but I am thinking of you. Xxx

Original poster

SallyJupiter · 12/08/2026 16:08

WorkingItOutAsIGo · 12/08/2026 15:02

My mother's is a meningioma, in a place where it is inoperable. But has never grown further and our belief is she will die with it, not of it.

sending you good wishes and hoping you get good answers soon xxx

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Where is your mothers? My husbands looks to be in the suprachiasmatic space and is putting a bit of pressure on the right optic nerve, but he has zero symptoms. He had his eyes tested not long before they found it too so no deficits. It's really odd.

Edited to add that he's only 44.

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WorkingItOutAsIGo · 12/08/2026 15:02

SallyJupiter · 11/08/2026 20:03

My husband's is causing early hydrocephaly but you'd never know it if you met him! I take comfort in the fact that his lack of symptoms hopefully means it's been growing so slowly that everything has had plenty of time to stretch and move (as much as it can in a confined space) so likely means it's benign. But it sadly also means that it is growing.

Glad your Mum's is stable. Were they able to tell you what it is?

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My mother's is a meningioma, in a place where it is inoperable. But has never grown further and our belief is she will die with it, not of it.

sending you good wishes and hoping you get good answers soon xxx

Original poster

SallyJupiter · 12/08/2026 10:29

Carriemac · 12/08/2026 08:46

What you need to see is a neurologist who has seen the scan and Neuroradiologist report . The report without context is fruitless . And the standard of reporting from the private scan companies can be poor/ non specialist .

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I'm not sure whether to be reassured or more concerned by that.

For what it's worth, we've used this scan company for a different issue a few years ago and found them to be really good. I do hope they are wrong about it being a glioma though. I am a bit peeved that they only did t2 weighted imagery, and only from the coronal aspect. I feel like we'd have a bit more info maybe if they'd done a more in depth scan.

I know all of my research and reassurance seeking is futile. It makes me feel like I'm not completely useless though.

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Carriemac · 12/08/2026 08:46

SallyJupiter · 12/08/2026 06:25

That's a really good idea. I didn't even know that was an option!

Glad to hear that you received good news re your lungs. The waiting is torture.

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What you need to see is a neurologist who has seen the scan and Neuroradiologist report . The report without context is fruitless . And the standard of reporting from the private scan companies can be poor/ non specialist .

Original poster

SallyJupiter · 12/08/2026 07:46

familyissues12355 · 12/08/2026 07:06

Morning op

Sorry you’re going through this, it’s a frightening time x

My son (child) was diagnosed with an optic nerve Glioma when young. If that is the diagnosis your DH receives, there is a Facebook page specifically for that tumour

Thank you.

I'm hoping he doesn't have it tbh, as it's not the benign diagnosis in adults that it is in children apparently. The initial MRI was only taken from one direction as they were only looking for evidence of bleeds and things so I'm hoping that the new one changes points to another benign lesion.

I'm so sorry that you had to go through the stress of your son going through that. How is your son now?

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familyissues12355 · 12/08/2026 07:06

Morning op

Sorry you’re going through this, it’s a frightening time x

My son (child) was diagnosed with an optic nerve Glioma when young. If that is the diagnosis your DH receives, there is a Facebook page specifically for that tumour

Original poster

SallyJupiter · 12/08/2026 06:25

50Balesofgrey · 11/08/2026 22:19

It's worth doing a subject access request for the radiology report. It might not speed anything up but, 1) it will keep you busy and 2) you may get a contact point for the Consultant's secretary, and they can be really helpful. 3) you will know whether it's been reported yet.
Subject access request is how I resolved my 2 month wait for lung results (negative) as I was worried even though I knew it would have to be good news.

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That's a really good idea. I didn't even know that was an option!

Glad to hear that you received good news re your lungs. The waiting is torture.

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Original poster

SallyJupiter · 12/08/2026 06:23

Sunnyphoenix · 11/08/2026 22:28

When you say 'He was referred on Friday of last week' who made the referral and do you know who it was to/whether they have been sent the scan? It's probably reassuring that they are being fairly relaxed but of course you'll be anxious to make sure he's in the system. We had a great group of neuro oncology nurses who were very helpful with any concerns but you are a bit in limbo until you are contacted.

The Brain Tumour Charity Trust might be a good source of info at this stage. They also have a facebook support group that you might find useful as there'll be lots of people with similar experience. My experience is with GBM and it sounds as if the indications you've been given are very different from that, but feel free to DM if I can be helpful.

He was referred by the doctor at our local NHS hospital to a bigger hospital in Bristol because they are apparently better equipped to deal with brain things. They were sent the scans from his MRI with contrast.

I'm in a state of disbelief that this is even happening. We have 3 children and our youngest is only 8 months and my head is a mess with all the potential outcomes.

Thanks so much. I'll have a look at the Facebook page. I took a look at the Brain Tumour Charity's website, but I think it was more of a hindrance at the moment as I don't know what he has, so I got caught up with all the worst case scenarios.

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Sunnyphoenix · 11/08/2026 22:28

When you say 'He was referred on Friday of last week' who made the referral and do you know who it was to/whether they have been sent the scan? It's probably reassuring that they are being fairly relaxed but of course you'll be anxious to make sure he's in the system. We had a great group of neuro oncology nurses who were very helpful with any concerns but you are a bit in limbo until you are contacted.

The Brain Tumour Charity Trust might be a good source of info at this stage. They also have a facebook support group that you might find useful as there'll be lots of people with similar experience. My experience is with GBM and it sounds as if the indications you've been given are very different from that, but feel free to DM if I can be helpful.