Has anyone got or had a MENINGIOMA?

[ThisBloodyNoiseInMyHead]

I've just been diagnosed with a Meningioma (brain tumour). It was fist picked up by the hospital when they did a scan after I had a stroke last July. I don't yet know whether it's cancerous or not, but I'm being referred to a neurosurgeon, so I expect I'll find out more then. I haven't got any symptoms, and apparently, this thing isn't pressing on anything.

Has anyone had or got one? What treatment (if any) did you have?
Thanks.

Well, I'd be crapping myself, I must admit.
We'll be thinking of you both x

Jeez sorry you've had such an awful time

I had a meningioma diagnosed just after I had my first baby, I was 31 at the time. The position of mine meant watch & wait wasn't an option, so I had surgery & since then have completed a masters &gone to have more children. I remember what a scary time that was. I can understand why you'd have reservations about surgery given your recent medical history. Hopefully the neurosurgeon will give you some reassurance and be clear about the options.

Are you on Facebook? You might find the group Meningiioma Mommas (and poppas) & Brain Tumour charity uk helpful. There are lots of people on there with experience of this condition.

Wishing you well

My DH did 12 years ago
He underwent a nine hour surgery as it was rather large by this point. Thankfully it never recurred and was very straightforward recovery wise

Just realised my typo on my last message - it should have said I feel reassured!

Womansfreakly Thanks, I'll look at that Facebook page.

theyhavenothingbuttheaudacity Thanks. I'm glad your DH has been ok since.

MissyB Wishing your husband well tomorrow.

Thanks, all x

I had one about 11 years ago. It was on the brain stem. I had a 9 hr surgery for it to be removed. Meningiomas are benign brain tumours so no chemo required. Because of the position of the tumour I have been left with some after effects but I am able to work and drive and lead a normal life. I was offered a watch and wait policy but as I was already symptomatic I didn't really have much choice. Because of the position of the tumour they were unable to remove it all and so I have annual mri's as there's a 40% chance it will grow back. I feel anxious after each scan dreading a call but so far all good. If it did grow back which I think is unlikely now but if it did I would postpone surgery for as long as possible as recovery took a long time and I'm 11 years older now so I imagine would be harder.

I can't do links but the article about Nicki Chapman's brain tumour mysteriously disappearing was in the Daily Mail on Saturday, and is online. Like her I've named mine - it's Boris!

My daughters named mine Terry and the night before my operation they made him a good bye cake 🤣🤣🤣

Dh's is called Dave

How is DH, Missy?

Yes I have one. Diagnosed after mri for dizziness and tinnitus. Was told not related to the tinnitus and I have been followed for 3 years now. Apparently it has grown from 16mm to 19mm in three years. Was shocked to hear that as at previous appointments was told 'stable'. Appointment was today, though I was told to just scan again in a year. Very hard to live with such uncertainty. All I was advised was to get in touch sooner if I have relevant symptoms. None of the symptoms I have are apparently anything to do with it. Go figure.

I had a spinal meningioma removed in January. It had grown to the point where it was displacing and compressing my spinal cord, causing partial paralysis of my left leg and all sorts of neurological issues, so had to come out as a matter of urgency.

I realise it's not the same, and any surgery you may need will be quite different, but just wanted to reassure you, as someone who had never had any kind of anaesthetic or surgery before and was pretty freaked out about the whole thIng, that if you do end up needing an op you will be fine! I had a team of 3 anaesthetists and they were so lovely and reassuring, surgeons seem to have done a great job, and recovery has gone well so far. Surgery might seem scary, but better than the potential neurological implications further down the line.

Good luck with whatever your treatment plan turns out to be!

Thanks for replying and glad to hear your operation went well. May I ask if you were left with any neurological deficits and whether the ones you had went away? I too have never been under total aneasthetic and the risks of operating on the brain sure make you think. Not keen on my skull being drilled into...for now I have to try to park it mentally until next year's mri. I can't help expecting symptoms to kick in though and can't quite relax...

Fortunately, my symptoms have improved massively, though not back to normal as nerve recovery takes up to 2 years (and of course no guarantee it will ever be entirely normal). But the almost constant burning sensations from abdomen down are gone, leg spasms gone, weirdmuscle rigidity and tightenings gone, think hyperreflexia in legs has gone, bowel and bladder function returned to normal, sensation in legs almost back to normal. I have weakened muscles down my left leg, though they are responding well to physio, and could lift my foot and leg normally straight after op, once the motor nerves stopped being squished by the tumour. Walking gait pretty much back to normal (very slight flop still in my left leg, but to be honest I don't really notice) and can hop skip and jump again!

It was quite frightening to think of all the possible risks of someone operating on your spinal cord, and I can only imagine how much more frightening it is to contemplate someone operating in your brain! But most of the risks I was informed of, including paralysis, would have been the eventual outcome of leaving the tumour where it was anyway, so it wasn't really much of a choice!

I actually felt much better once I had the diagnosis and knew what the course of action had to be. I feel for you, as I would really struggle with that kind of protracted uncertainty. In my experience, neurosurgeons are pretty direct so you may feel better once you've spoken to one (though sounds like that may be a while away). And if they do have to operate, chances are they will be amazing at what they do because I think it's one of those areas where you have to be.

Reassuring to hear how much the operation improved things and that it didn't cause any damage. The nervous system is such a delicate area.

Hello OP / others, not sure if anyone will see this but looking for advice as my sister has just been diagnosed with two small meningiomas. OP so sorry to read you had a stroke - I’ve also had one. There’s nothing worse than being told there’s something wrong with your brain. So sorry you’ve been through so much. Hope you’re doing ok now x

Since my last update on here, I had mine removed, coming up for two years ago now. All went well and I’m driving again, but I’m still having regular MRIs and I still get problems with memory and concentration. Had no choice about the surgery really though, after three seizures in 24 hours including one in which I split my head open.
Is your sister opting for surgery, @thesecondmrsdewinter20 ?

DH has one. The neurosurgeon said it had been there since puberty. He is now 56. He had repeat MRI scans to check it wasn't growing. If it does it won't be operable due to its location.

So glad to hear that your surgery went well, and that you’re doing ok now. Three seizures in 24 hours sounds awful, I’m so sorry.

It’s all very fresh, she was diagnosed in A&E and needs to wait to see a consultant. She’s very reluctant to have surgery as the thought terrifies her. She’d had some vision issues which prompted the visit to A&E but oddly the doctor thought that it must have been unrelated due to the location and small size of the tumours.

I was the same, very resistant to the idea of surgery, but I now wish I’d had it done earlier as further investigations have shown more damage around the tumour/surgery site than first realised.
Also it was only a matter of time before I fell down the stairs or under a bus or something as I had absolutely no warning and would just lose consciousness and topple forwards or crash over backwards.
All kind of ok now, was back at work after a couple of months, driving after a year, but I was recently told that it vastly increases my chances of developing dementia in as little as ten years, so mid 60s. Maybe 20 years, so mid 70s. It took me a while to get my head around that and to realise that an increased risk is not a definite.
I lost my sense of smell completely after the surgery and I had to learn to cope with my memory and concentration issues but I try to keep my brain active and I’m losing weight to reduce the risk of dementia, and trying not to worry too much about what may or may not happen in the future.

Best wishes to all on here who have a brain tumour or a loved one with a brain tumour.
They are surprisingly common. I’m a GP receptionist and know of several of our patients that have them. I’m always open about mine, and they see that I’ve got through it and am back at work. One of them told me I was her inspiration, which was a lovely thing to say.

Thank you so much for sharing your experience and all your words of reassurance, it’s so appreciated. Really glad you’re doing well now :) definitely an inspiration!
My poor sister is only in her early 30s so it’s a huge shock. My stroke happened when I was in my 20s too. Feels like a lot of rotten luck for our family. But reading this thread has made me feel so much better <3

Lovely helpful inspiring thread - thank you all - I've just been diagnosed and see neurosurgeon on Monday, so great to read this before then

How did you get on, @loveyouradvice ?
It’s a lot to take in. I hope you have supportive family and friends - and a supportive employer who will make any necessary adjustments.

thank you @Papergirl1968

Thankfully very encouraging - bit bigger than I expected at 1.9cm x 1.6 cm - and almost certainly a benign meningioma and it's rescan in 6 months to see what speed it is growing at, and whether likely to need to operate some time.

I gather that some don't grow at all - hopefully mine! - but typically 1% pa, and some grow as fast as 20% pa....