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Original poster

Has anyone got or had a MENINGIOMA?

58 replies

ThisBloodyNoiseInMyHead · 04/03/2022 20:17

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.

OP posts:

Papergirl1968 · 04/03/2022 20:32

Yes, I have.
Mine was diagnosed in October after I had a seizure in July.
I was offered the choice of surgery or wait and see if it grows. I've chosen to wait.
I had seizures about once a fortnight from October to December, particularly when I was tired. Most of them have been absence seizures but a couple where I lost consciousness and fell to the floor. These have now stopped because the anti epilepsy meds have kicked in.
I've had to stop driving and I seem to have partially lost my sense of smell, otherwise I feel ok.
I'm still working part time. I've just qualified for PIP and I'm very much hoping my huge taxi bill for journeys to and from work will be largely paid for under Access to Work.
It's a huge shock to be diagnosed with a brain tumour. Even now six months on it still pops into my head "oh my god, I have a brain tumour!"
If there's anything I can help with or advice on, or you just want a handhold, just let me know.

Original poster

ThisBloodyNoiseInMyHead · 05/03/2022 15:16

Papergirl1968 I'm sorry you've had seizures and hope you feel better now. Thank you for caring . I do this thing of putting on a brave fave (a front), even to family. It's my way of coping with things. Now that the news has hit me, I'm very frightened (although I haven't yet had any symptoms) of what will happen. I got through Covid (was on a ventilator for 2 weeks) and the stroke (they said caused by Covid) last July, and now I've got this. I'll get through it. Thanks x

OP posts:

Original poster

ThisBloodyNoiseInMyHead · 05/03/2022 15:16

a brave face I mean......

OP posts:

Papergirl1968 · 05/03/2022 15:44

Me too (the brave face, that is). The only time I cried was when work told me they were terminating my contract because they were only thinking of me, blah blah, and I cried all day then! This was a GP surgery, ffs, where there were always doctors and nurses on hand if I happened to have a seizure at work - I never have, thank goodness. They hastily backtracked after realising they'd be in breach of disability discrimination laws.
It is frightening and one hell of a shock so be kind to yourself.
My neurosurgeon told me I have had it for many years without being aware. I have friends who have told me they wouldn't have hesitation in having surgery but I don't want it unless I have to. If it's any consolation another consultant told me he has known a lot of people whose brain tumours have not grown or caused amy issues for 20-odd years.

Papergirl1968 · 05/03/2022 15:46

Any not amy issues, that should read.

Original poster

ThisBloodyNoiseInMyHead · 05/03/2022 16:04

Bloody hell, your employers sound nice . I was told that I might have had this thing for months or years. I just hope that I don't need anything that involves an anaesthetic - I'm terrified of being put to sleep as when I was on the ventilator (obviously unaware of anything) they decided to take me off it to see if I could breathe unaided (I don't recall any of it). I couldn't, so after a day or 2 they decided to put me back into a coma on the ventilator. Gave me the wrong drug - instead of the sedative, they gave me Adrenaline, which sent my BP to 340 top figure!! They told me all this after I was back home (6 weeks in hospital) and there was a big inquiry - they sent me the findings and admitted all these various faults that had happened. They said that didn't cause the stroke (a convenient coincidence I reckon) but I have got to try to forget all that. Sorry to drone on, thanks for reading x

OP posts:

Papergirl1968 · 05/03/2022 16:13

God, that's shocking. I don't blame you for not wanting to have an anaesthetic.
Mine is at the front of my brain. Neurosurgeon told me surgery would be about six hours, involving removing part of my skull and replacing it with a titanium plate, five days or so in hospital and six to eight weeks off work. If the tumour had been smaller they could have gone up through my nose but it's too big for that.
I must look up the TV presenter Nikki Chapman as a friend told me she'd had surgery and although they hadn't been able to get all of her tumour out, it had now gone.

Mrsjrewing3 · 05/03/2022 16:26

Hi. I was diagnosed with a meningioma in June 2018. I suddenly lost all vision in my left eye and after waiting a few weeks for a MRI it was discovered that I had a meningioma that was pressing down on my left optic nerve.

As a result I had a craniotomy a few weeks later (I couldn’t afford to wait as the vision in my right eye was under threat). The tumour could only be partly removed due to its location but fortunately turned out to be benign. I was off work for 5 months following surgery (I’m a teacher) but made a good recovery. I am on medication (steroids) due to the damage the tumour did to my pituitary gland but I have been lucky to never have had seizures.

In November 2020 it was found that what was left of my tumour had started to grow again so the following January I underwent a course of radiotherapy. It seems to have been successful as my most recent MRI scan showed that the tumour is stable 😊

Currently I work full time ( still a teacher) and feel as if I am fairly healthy, although the vision in my left eye did not return. Getting a diagnosis does come as a terrible shock. Wishing you all the best x

Original poster

ThisBloodyNoiseInMyHead · 05/03/2022 18:53

Papergirl1968 I can understand you wanting to wait and see. The operation sounds quite drastic. I'll Google that about Nicki Chapman x

Mrsjrewing3 You've been through quite an ordeal. I hope things continue to go well for you x

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Mrsjrewing3 · 05/03/2022 19:47

The same to you @ThisBloodyNoiseInMyHead Once you have more information/ just feel you need to talk to someone who knows what you are going through, please feel free to get in touch. I have been so fortunate to have made such a good recovery but haven’t forgotten the bewilderment I felt after my diagnosis x

Original poster

ThisBloodyNoiseInMyHead · 05/03/2022 20:09

Thank you, Mrsjrewing3. x

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Papergirl1968 · 05/03/2022 20:17

I have an appointment with opthalmology next month, Mrsjrewing. I don 't know if that's just a precaution or if my eyesight is threatened.

Nomoreusernames1244 · 05/03/2022 20:19

My friends mum has had one for over 10 years.

She’s not had any treatment bar monitoring scans. Symptoms are relatively mild, some tremor and dizzyness. Surgery is an option but currently a bigger risk than leaving it- surgery or chemo/radiotherapy might change it or cause it to spread, and the side effects of surgery are unpredictable, could be minor, could leave her in a vegetative state.

She now doesn’t even have scans, but she can phone the neuro dept any time she’s worried and they will bring her in for a scan.

MissyB1 · 05/03/2022 20:25

Dh has a brain tumour but it hasn’t been biopsied so we don’t have an exact diagnosis of what type it is. Possibly a meningioma but more likely an ependymoma. He was diagnosed in 2017 and had been on watch and wait all this time. It grows very slowly about 1mm a year. Unfortunately he has developed some hydrocephalus now, so on Tuesday he will be having a shunt inserted to drain that. He will have two weeks off work and hopefully if it’s all gone smoothly he will just get on with life.
He works full time as a Doctor.

At some point the big surgery will have to happen to remove the tumour, but we are hoping to get another 3-5 years before that has to happen. Because it will almost certainly end his career.

Original poster

ThisBloodyNoiseInMyHead · 05/03/2022 22:20

MissyB1 I hope everything goes well for your husband x
Nomoreusernames1244 It's good that the hospital is monitoring it. x

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ginjenny · 06/03/2022 11:29

I have one! It was found in 2019 and my neurosurgeon thinks I've probably had it about 15 years! It's the size of a cashew nut and is currently wrapping itself around my trigeminal nerve causing trigeminal neuralgia (2 for the price of 1, lucky me!)

I'm currently on watch & wait and just waiting for the results of my last MRI, it hasn't grown in the last 3 years fortunately! Neuro doesn't want to operate!

I take carbamazapine as the TN was giving me some pain!

fitflopqueen · 06/03/2022 12:06

My friend was diagnosed with one, only symptom at the time was a single fit, diagnosis was quick thanks to company health insurance. He had surgery to remove it as it had started to grow and was behind his eye. Apart from not being able to drive for 12 months post op he is fine. No longer requires scans or follow ups 10 yrs on.

Original poster

ThisBloodyNoiseInMyHead · 06/03/2022 12:43

ginjenny Trigeminal Neuralgia is painful! I'm glad that the brain thing isn't giving you any other problem x

fitflopqueen That's good news then about your friend x

I feel pressured by all these comments, so thank you all. Mine is on the left side of the brain, in the part that deals with emotions

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Papergirl1968 · 06/03/2022 13:48

I hope all goes well for DH on Tuesday, Missy.

Mrsjrewing3 · 06/03/2022 13:49

Hi @Papergirl1968 Hopefully your appointment with ophthalmology is just a precaution. - I know it’s a difficult thing to do but try not to worry about it. I still attend ophthalmology on an annual basis.

ProfYaffle · 06/03/2022 13:55

DH has one. First diagnosed in 2004. He had 3 rounds of active treatment, the last one in 2016. He's had 2 craniotomies, 1 keyhole procedure and radiotherapy. He's fine now, only see effect is loss of smell. He's on 2 yearly scans now

Libertybear80 · 06/03/2022 15:12

DH diagnosed with one a few years back. He had to have 6 monthly MRI scans but now no longer has scans. It's sitting right in the centre of his brain so if it did grow it couldn't be operated on anyway. We have both stopped thinking about it now.

WorryMcGee · 06/03/2022 15:40

My husband had one, diagnosed after he had a seizure. It was too large for any treatment option other than a craniotomy, which he had at the end of 2020. It was pressing on his motor cortex and speech centre. Surgery went so well (albeit long - 9 hours!) that they were waking him up that evening, and 48 hours later they discharged him because he passed all their tests. I couldn’t believe it when they called to say I could pick him up. Recovery has taken time, but a lot of that is mental (he was diagnosed with PTSD) rather than physical (from a physical standpoint it couldn’t have gone any better) he continues to take anti-seizure medication now but they don’t have any side effects. He’ll be monitored for 10 years, according to his neurosurgeon - who also doesn’t expect it to grow back, as it hasn’t so far. Lots of love to you x

Papergirl1968 · 06/03/2022 15:59

Thanks, Mrsjrewing.

MissyB1 · 06/03/2022 19:14

@Papergirl1968

I hope all goes well for DH on Tuesday, Missy.

Thanks @Papergirl1968 He’s very nervous now, but I think he will feel much better when the hydrocephalus is drained. It might relieve the pressure headache he keeps getting 🤞

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