Menigioma

[Alittlebitweird]

Went to A&E today due to lightheadedness/muscle weakness that came on suddenly. ECG, CT scan, bloods. Told everything looked fine and went home. Hospital ring an hour later to say they'd got the official CT report back and they've found a 1.8cm menigioma. Tbh I didn't really hear much else past 'brain tumour'. I understand they're slow growing and don't always need to be removed. I think I'm being sent for an MRI scan to get a better idea of what's what.

Anyone been through this?

Sorry to hear of your diagnosis, that must have come as a complete shock to you. However, as you say it is one of the brain tumours with better outcomes and I hope that applies in your case too.

I don't have any experience or family members with this, however I do have another health issue and found a Facebook group that has been tremendously helpful, with advice and experiences from others suffering the same thing as me.

Maybe you could join a meningioma support group on Facebook? This one I've linked is UK based, others are US, but it's no harm to find out what research is going on outside of the UK too. (assuming you are in UK that is). Wishing you the best as you navigate this.

www.facebook.com/groups/TbtcMeningioma/

Thank you so much @vandelier I will join the group and learn to spell the word correctly. 😳😂 It was a shock however until I've had an MRI and spoken to the neurologist I'm trying not to worry too much. I can't change anything.

That's a great attitude, good for you. Onwards and upwards in your journey x

https://www.thebraintumourcharity.org/brain-tumour-diagnosis-treatment/types-of-brain-tumour-adult/meningioma/

you may also want to look at this charity’s website too. Knowledge is power!.

Wishing you all the very best

Yeah, my aunt has one.

diagnosed 15 years ago now when she was 65. At first she had the usual “brain tumour”
panic and he friends were on about “battles” and “fighting”.

when her consultant said they weren’t going to treat it another panic as she thought they’d made some sort of decision that she wasn’t worth treating as she was old…

so I went to the consultant appointment with her (I have a medical background).

as you say, slow growing, rarely malignant. We went through the possible “treatments” - surgery could lead to serious brain damage. Surgery/chemo/radio could disrupt the tumour or mutate dna and make it more aggressive/cause it to spread.

she was reassured, with a plan for a yearly scan to monitor growth and the understanding that should things change treatment could be revisited.

like I said, 15 years later and she’s still very fit and well with only minor symtoms that don’t cause any issues. She likes to scare new baby GP’s when they ask her about her medical history- blood pressure, statins, oh and a brain tumour 😂

good luck, and remember sometimes the best thing to do is nothing. Might be better to live with it than get aggressive and risk the side effects of treatment.

I have a meningioma. It was found about 5 years ago and my neurosurgeon reckons I've had it about 10-15 years! It was found as I was getting weird sensations in my mouth and around my teeth!

It's about the size of a broad bean and in a position that makes it virtually inoperable! I'm on watch & wait! These tumours are generally benign and rarely turn cancerous, although the word tumour is pretty daunting! It does give me issues as it's pressing on my trigeminal nerve but the pain is mostly controlled by drugs!

As the previous poster says a lot of the treatments can do more harm than good, making the problems worse! For now, I'll stay on the drugs! Also I have MRIs every year with contrast just to check what it's doing! So far (touch wood!) it's remained stable!

There is a really good Facebook group - Meningioma Support Group - The Brain Tumour Charity. Really helpful and knowledgeable members! There's bound to be someone on there with a meningioma in the same place as yours and will give you lots of advice!

Hope this helps!

Best Wishes x

Following with interest. I had a meningioma picked up as an ‘incidental’ finding when I had an MRI scan for something else. I’ve been referred to a neuro consultant at St George’s in Tooting but not heard anything back. That was in January around 13.weeks ago. I guess I should hear something back around the 18,week mark?

Thank you. That's really reassuring. I'm not telling people until I know what I'm dealing with. No point everyone worrying with me. I'm glad your Aunt is doing OK.

I don't know where mine is yet. The Doctor probably told me but I didn't take much in. It's a lot to take in.

That's a long wait! 🙈 They said mine wasn't related to the symptoms I'd presented with. I know they were checking for a TIA/stroke but wasn't expecting a brain tumour. Funny old day.

I have one @alittlebitweird .accident diagnosed mid Nov last year it was already over 5cmx5cm so things moved very quickly. Mine is wrapped around my carotid artery and sat on my optic nerve. I was seen, had a pre op and was in within a couple of weeks and had a craniotomy. It looked terrifying from the pictures BUT I can promise I had no pain at all. I spent a night in ICU, a night on a ward and went home to put Christmas decs up! There've been a couple of balance and memory issues but I guess it depends where the tumour is.
unfortunately they couldn't get it all so I will have regular scans to check for growth, but honestly I am doing amazingly 4 months post op. The only side effect is tiredness but it's manageable with naps.
no one knows what's around the corner so live your best life. I got the all clear to fly after 8 weeks and have 3 holidays booked for this year so far. As soon as I can drive again I'm off in my motorhome!
please don't be scared - it sounds awful but you will be ok. One day at a time and one hurdle at a time.
lots of love and hugs and if I can help just shout xx

Looks scary but didn't hurt at all!

As I understand it from my aunt’s consultant it’s not so much whether it is in an operable position, but where it is as well.

in my aunt’s case it is operable, but the area of the brain it’s in is quite variable as to function. So there’s a real chance that they may hit a part that controls something major like speech or movement, and leave her with serious deficits.

so unless the tumour is life threatening, or the symptoms get so bad life is intolerable, it’s not worth the risks of trying to remove.

my aunts, as it grows it gets further away from a blood supply, so those parts die and it collapses in on itself. So while it is growing, it’s not getting physically bigger so not causing any more issues.

I had Covid in 2021, put in an induced coma and had a stroke (caused by Covid, they said). They did an MRI and then found a Meningioma. It's on the Petrous Ridge part of my brain. I had a few symptoms but nothing that causes me any problems. Since then, I've had yearly MRIs to check it and, so far, it hasn't grown and isn't pressing on anything anywhere. I'm 65 now.

Gosh! That sounds incredibly scary. I'm glad your op went well and was painless. It's really good to hear positive stories. X

@Alittlebitweird If I gave you any advice it would be this: deal with the situation before you. It could be a small M that is causing no or few symptoms and has no associated oedema. If that's the case you'll probably be on 'watch and wait' meaning regular checks. But live life between them.
If it's a big nasty causing life threatening issues they'll give you a treatment plan. Deal with it a day at a time.
I was warned that mine had high risks of bleeding out or coming round blind. I could have worried but neither happened. One day at a time.
I looked at support fora and left them because they were so bleak. Everyone complaining about side effects that seem minor in a life and death situation. I'm 17 weeks post op. No seizures or fits, some left sided weakness that I work hard to correct. My memory is shot so I've developed a post it note system so I'm usually in the right place at the right time, but when I'm not I just say 'sorry, I've got a brain tumour' and everyone is brill. The other day I was filling in a raffle ticket thing and it wanted my address. I knew I lived at no 37 but I couldn't remember how to write it. I couldn't work out which numbers in what order. I just left it till I could. Didn't stop me organising a trip for 8 to Naples, sorrento, amalfi, capri, Pompeii, Herculaneum, positano, Vesuvius... I just couldn't write 37!!!
please be positive. Deal with things as they arrive and don't listen to the doom mongers. I see this for me as a chance to claim a life back to live fully and with joy. And I'm bloody doing it. Stay strong my friend ❤️❤️