Brain tumour - meningioma

[AloneInTheWorld1]

Had my first seizure the other day. Now in hospital, had a CT scan. Revealed that I have a meningioma. Waiting on an MRI and see the consultant to get more answers.

This was the last thing I expected. I'm coping better than I thought with something like this. At least I know why I had a seizure, that was terrifying.

Thank you both 😊

Well, it's 2 inches so pretty large! Just waiting to get moved hospitals tonight to see the specialist.

Argh this is scary stuff. But it's a new experience I guess!

DP had this, diagnosed after a massive seizure. Operation straight away, then got an infection so back and forth for a bit. Then he was fine, then he had another seizure, brought on by a cold and toothache which the professionals say can sometimes happen so now he’s on anti seizure meds, but otherwise right as rain, yearly scans and that’s it. The infection part was pretty messy but the op was surprisingly ok, considering what was involved. He woke up and was texting me immediately complaining he was hungry and the food was rubbish 😂 his face was a mess from the bruising and swelling as it was on his forehead and he put on weight from steroids but then lost his sense of taste for a bit so lost the steroid weight. The scar line looks awful but he’s luckily got a good head of hair so it’s now hidden. He was tired for a good 6-9 months afterwards and wasn’t allowed to drive for at least a year after each seizure. So, all in all, not a pleasant experience but not as bad as you’d think. Am hoping this gives you a bit of hope, OP. If you have a similar experience to him it is life changing for a little while but recoverable.

Hi, thank you for sharing! Do you mind me asking how big it was? I've had a massive seizure and am having some neurological symptoms. In fact probably loads that I've been passing off for years as being clumsy, forgetful etc.

I'm still waiting on patient transport - it is the weekend! But I know it's coming because the hospital want to see me asap.

I have to admit the thought of brain surgery terrifies me!

@AloneInTheWorld1i think it was about 3cm, hence why there was no option to wait and see. No other signs pre or since, apart from his sense of taste going funny for a while but in hindsight that could have been the massive amounts of antibiotics for the infection. His seizure was at the weekend also so there was a lot of waiting around to get to Charing Cross. All in all he didn’t spend much time in hospital, he was released while he waited for results and the op, which was about a week later. It was during Covid but his care was excellent. He was under the care of the cancer team even though it was benign. I think the skillsets for both are the same but it was alarming sitting in the cancer waiting room. If that’s the case for you, try not to be alarmed. Happy to answer any other questions, I know it must be really scary. Have you got support?

@AloneInTheWorld1the consultant said if he was going to have a brain tumour this was the best one to have as it sits right on top of the brain so is easy to get to. I hope this gives you a bit of comfort about the op.

My tumour was 4cm.
I’ve heard back from neurology - actually they wrote a month ago but I only found the letter on the NHS app today. DD and her partner recently moved back in and several times saw me zoning out for a couple of minutes, and then starting to talk about something completely unrelated. The neurosurgeon thinks these are probably little absence seizures, most likely due to the brain damage. I’m now desperately trying to find out if I need to surrender my driving licence again - I’m pretty sure I will as my insurance will be invalidated - and have shed a few tears.
I was also crying on Saturday because I was supposed to go to a family birthday party but was tired and just didn’t feel up to getting ready to go, travelling 13 miles or so, and going into a busy, noisy, crowded venue, so had to drop out. Meeting one or two friends at a quiet pub for breakfast or lunch is fine but I should have known better than to accept the invitation because evening events have been too much for years especially that kind of sensory overload.
I’m thinking of you, Op, and everyone else on here who is - or whose loved one is - going through this.

Hi I'm so sorry to read this. I can't formulate a proper reply my head's all over the place too. I'm still having little focal seizures on the meds.

It's been a total nightmare, just home after 2 weeks and waiting for a surgery date.

I can understand the tears - I keep crying and laughing sometimes at the same time!

Wishing you all the best and to anyone else going through similar 💕

I have, thank you. I'm very lucky. I wish I was able to reply to you all better but I'm on so much medication plus the sudden onset of the symptoms I can barely remember my own name right now.

You're all so kind 💗

Bless you @AloneInTheWorld1 post back here when you’re feeling better x

Thank you. None of it feels real just now. It's all just been so sudden and I'm worried the huge seizure I had might have damaged my brain 😞 I know it's more than possible and it can all be ok in time.

I've been referred to mental health services because I just don't know how to move through all of this.

Hope you're all well

@AloneInTheWorld1get in touch with Headway, they’re very good at all this sort of stuff and might be able to get you specialist help to help with your mental health. The drugs and the tumour and the whole set of circumstances will all probably be contributing to how you’re feeling so see it as something that can be worked through in time and try to take it easy in the meantime (easier said than done I know) DP managed it all remarkably well but admitted that in his own blokish way he’s very good at compartmentalising things and didn’t race ahead of things and took it all step by step. He did this much better than I did. It’s a good skill to have, if you have it, and if you don’t don’t be hard on yourself.

I am not good at compartmentalising! I'm either totally numb or panicking 😆

I was unconscious for a very long time and that's what scares me because I know how dangerous that is. However, I also know that is why they found it. So I do feel lucky.

Thank you, I will have a look at headway. I've had neuropsychology and neuropsychiatry input in the hospital, but I don't really know what the follow up will be apart from my looming surgery.

You don't get much time with these people and I forget what I want to ask.

I shall muddle through though, and thank you for your kind words. It's comforting to hear that there can be a positive outcome!