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.

So sorry you’re going through this @AloneInTheWorld1

💐💐💐

I had this several years ago. I know it’s a huge shock and it’s not great but as brain tumours go, but they are usually benign.
I decided to adopt a watch and wait approach but the seizures got worse and I had to have it removed two and a half years ago. No more seizures since (I don’t think, although dd1 suspects I may recently have started to have small absence seizures so I’m waiting for a neuro appointment).
Headway and the Brain Tumour charity have loads of info on their websites.
I’ll post again later as just off to work.

I’m back.
Ok, so absence seizures progressed to full seizures for me where I would crash over unconscious without any warning. They progressed in frequency too, which kind of took the decision out of my hands.
If you’re in the Midlands, the care at the Queen Elizabeth Hospital in Birmingham is fantastic. I was in hospital for three nights after surgery, went back to work two months later, and could drive again after a year.
I lost my sense of smell completely after the surgery and I struggle with memory and concentration. Some memories from the last few years have gone completely, but they’re fine from years ago. I do struggle learning new things and I get tired - neuro fatigue - because I have to put so much effort into concentrating. I’ll be on anti seizure meds for life and again these can cause fatigue.
My one regret is that I wish I’d opted for the surgery earlier.
You have to think about your safety - things like having showers instead of baths in case you have a seizure, standing well back on the pavement when crossing the road in case you fall forward into the traffic, or being careful when using the hob in case you fall forward on to the oven be one second nature. And think about the risks of carrying young children if you have them, letting go of the dog lead on walks etc. My seizures were almost all in the evenings so I’m pretty sure tiredness played a part.
Once you know what the plan is and how your tumour is affecting you, look into whether you’re entitled to PIP. I did have it but lost it when it was reviewed after I’d started to drive again. During the period when I couldn’t drive I qualified for a free travel pass from the regional transport organisation, and Access to Work paid most (I think, it was 75 per cent) of the cost of taxis when I worked in a remote location which wasn’t accessible by public transport. Access to Work also paid for noise reducing headphones as my concentration problems are worse when there is a lot of background noise such as people chattering and phones ringing.
On the plus side, I got to watch lots of drama series that I’d previously seen and completely forgotten! As I settle down to watch Line of Duty or Happy Valley again I sometimes think, ah Boris (the name I gave my tumour), the gift that keeps on giving!
I’m a GP receptionist and a surprisingly high number of our patients have brain tumours. I’m very open with them about mine and one of our patients told me I was her inspiration, which was a lovely thing to say and meant so much to me.
As well as patients, a second cousin on my mom’s side has had a brain tumour, a second cousin on my dad’s side, my former boss, my mom’s hairdresser’s son. They are surprisingly common. I tried to think of it not in terms of why me, but why not me. I may give the impression that impression that I’m very stoic and I honestly don’t think I cried at all - until I had the surgery. I came round from the anaesthetic crying and I don’t think I bloody stopped for about a year!
If you need any supper or have any questions, just reach out. And be kind to yourself. It’s a big shock.
Sending unmumsnetty hugs x

What a shock!
I hope you are being well looked after

My DH had a brain tumour and he only found out because he passed out at railway station waiting for a train. Went to hospital as couldn't remember his name when he came too. Had a scan and a big tumour identified pressing on his pituitary gland and tangled around his optic nerves. He had to have it removed because he was going blind. I can second outstanding care given by Queen Elizabeth hospital in Birmingham. DH had Mr Palutzi do the operation. I was told it would take about 4-5 hours but it took over 8. It saved DH sight and no more passing out. He was in hospital intensive care for 2 nights then in side ward for 10 days. He got let out early because it was just at start of COVID pandemic and he was told he's safer at home than in the hospital. DH couldn't drive for over a year whilst waiting for operation but cleared to drive 6 months after operation after clear brain scan. He just needs a brain scan every other year.

Bottom of my post I meant support, not supper!

Are you on the depo injection OP?

Thank you so much for this! It's so mad, never had anything untoward happen then the other day I thought I had pins and needles in my arm and leg but it wasn't and then I woke up on the bathroom floor in my own urine, having badly bitten my own tongue and having hurt my foot.

Its just very surreal. I'm trying to take it in my stride and be positive.

I think the scariest part for me was the memory loss afterwards, I'm still not quite right.

MRI hopefully Monday and get a better idea of what's going on.

Thanks so much 😊

Yes, I can't fault any of the medical staff here, they're amazing.

Oh wow you both must have been so scared! Yes after my seizure I couldn't remember details about my own life, it was the most bizarre thing.

Glad he's recovered and doing so well 😊

I'm just on an anti convulsant, and painkillers for my tongue. We'll see what happens after the MRI.

Sending unmumsnetty hugs, OP. Someone close to me has one and it's scary. Watch and wait atm but talk of surgery as it's growing. 💐 good luck for your MRI.

Yes exactly, I'm just waiting to see what happens. I don't fancy another seizure but I'll wait and see what the experts recommend once the MRI is complete.

I have a meningioma. Mine is wrapped around the trigeminal nerve causing trigeminal neuralgia. I don’t have seizures but take a lot of medication for epilepsy which stops the pain caused by the neuralgia. I’m currently on watch and wait with MRIs every year. There is a really good Facebook group which is very friendly and is extremely helpful -

Meningioma Support Group - The Brain Tumour Charity

Oh that sounds awful, my mum gets neuralgia and it's agony.

Thanks for the recommendation, I'll check the group out 🙂

Update: MRI today showed 8mm midline shift and a lot of distortion. I'm being referred to neurosurgery, and the doctor reckons they will want to operate.

Happy to have an answer but obviously shell shocked.

Oh gosh op that is a shock but I’m sure the neurosurgeons will explain everything and you’ll be in totally capable hands

Thank you. But it makes sense when I look at how massive the seizure was. Such a rollercoaster of a week. I've been an inpatient the whole time. I thought I'd get home today! Don't think I'll be home any time soon.

One foot in front of the other.

Hey. Yes, it's a big shock. Grab any support you find. My dh was diagnosed with a meningioma in 2004, there have been ups and downs. I can't say it's been easy but it's nowhere near as bad as we thought it would be when he was diagnosed. Hang on in there, we're all with you.

Thank you, I definitely am! The seizure has terrified me so I'm trusting that experts know what's best in the hopes I won't go through that again.

Sending you lots of positive thoughts xx

Thank you 😊

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Best wishes to both of you.