Any radiologists or neuros? Extremely worried

[SallyJupiter]

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.

I am sorry that you have had this news, which is especially anxiety provoking when you don't have the full picture yet.

Medical experts in the field won't be able to give advice or say anything here. We would risk our registrations and be operating outside of professional code of conduct.

Brain masses are by nature extremely complex and can have a variety of causes. The distinction between benign and malignant isn't quite as straight forward as it is for other masses, because of the location in the brain.

I appreciate it's very hard to wait, but they will be in touch to discuss with your husband as soon as they can. Neuro moves very quickly when it needs to. I have known people have surgery within hours of scan results. They will let your husband know what the treatment options are and what you are dealing with.

I hope you both get answers soon, and that they are able to develop a treatment plan for him.

sorry I meant the MDT team will discuss the likely diagnosis, treatment options and prognosis which will give the full picture . A private hospital radiologist would not do this in isolation.

This has given me a lot of reassurance. Thank you so much fir posting. The report said they suspected a glioma but I've read that these are not great in adults. I'm trying to stay calm as we have e young children, with the youngest being only 8 months old, and for the most part I'm pulling it off outwardly at least. I have lost 3kgs in as many days though so I'm not doing well on the inside.

Is it a good sign then that he hasn't been contacted yet? He was referred on Friday of last week.

I just feel like whatever it is, life as we knew it if of course over. I think I'm just grieving a little bit.

I think most people in this situation would be avidly trying to find and digest any information they could really.

There are different types of glioma, it's not necessarily bad news, and the bad ones are often quite identifiable on scans, so try to hold tight. I'll be thinking of you.

Thanks. He has no symptoms at all besides one episode of aura which is what prompted the initial MRI. It's all really odd. The hospital gave us a bit of a false impression that someone there would look over his MRI with contrast images and be able to give us a bit more information which then didn't happen, which is where my frustration stems from. I am definitely just spinning my wheels I know.

What symptoms led him to do an mri?
Eg falling over or seizures or double vision?

Sorry totally insensitive of me in my last comment.

I am so sorry to hear of your brother's diagnosis.

She may have. It's a bit blurry now unfortunately!

He had one episode of aura without a headache, which was really unusual for him. We booked an urgent GP appointment who was concerned about a mini stroke. Neuros at the hospital weren't worried and sent him home but we booked a private MRI just to be sure and that's where they saw it. I have the images plus the written report.

I'm so sorry to hear what you've been through, even if I can find some weird comfort in the fact that things moving slowly is reassuring.

Is it where the consultants get together to discuss their cases and new referrals?

It wasn't a hospital. It was an online direct to scan company scan.com.

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?

This is so awful for you OP.
Hoping you get clarification soon💐🌹💐

Thank you so much. It means more than you know.

So he has a a private report that says ?glioma, and a NHS CT & MRI that you only know confirms a mass, but no further results?

It must be so hard to wait but I think it's all you can do.

Yes. The private report says 'appearances nay indicate an optic nerve glioma'. I'm really hoping they're wrong because from everything I've read, this type is super rare in adults and is usually much more aggressive and has a poor prognosis.

As you can tell, I'm not doing so well with the waiting 😅. You are absolutely right. I know any and all reassurance or otherwise is somewhat futile. I just need to feel like I'm doing something.

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.

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.

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.

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?

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 .