My mum has a Brain tumour

[Katyrosebug]

This is probably the completely wrong place to post but I just want to talk to anyone who's been through similar.

My lovely mother who is 63, has a few things wrong with her, hearing aids which she's had for around 15 years or so, she's also got a wet macula in one eye. About 6 to 9 months or so ago she was getting sharp shocking pains in the other eye, doctors thought it was a nerve problem and gave her tablets, she took 2 and they made her face go numb to the point she couldn't feel her hands, she still had the pain so they upped her dosage to 5, she obviously had to give up work as she couldn't do anything (retired ks1 teacher but working in a care setting)
Recently her speach has gone funny like she sounds drunk, we thought it was the new medication, plus she was becoming forgetful etc. One MRI got cancelled and they didn't tell her so her and my dad drove 40 minutes to the hospital to then come back, finally on Sunday she had her MRI and has a tumour 😭 we only found out last night, it's not cancerous thankfully but we're still waiting for her appointment to come through for the next lot of tests to see if they can take it out.

Has anyone else been through similar?

I'm sorry, I've not been through similar - my mother however is in the last stages of her life.
Sending you a hand hold.
Just try and stay grounded as you all wait for news. Do little things that add to the quality of your lives. Nice meals. Cosy blankets. Lots of hugs for everyone.

I'm going to make sure I spend as much time with her as possible, even if it's just going out for a bit of cake or popping in to see her every day.
Years ago when I lived at home my bedroom was an extention that backed onto the kitchen, her singing would annoy me so much and Id wish she'd just be quiet, now I can't stop thinking about it and that soon I might never hear her singing again

I have a brain tumour.
It was diagnosed just over a year ago after I stopped speaking mid sentence while on the phone to a friend, which I now know is called an absence seizure. I've had quite a few of those and have also lost consciousness completely a handful of times.
Anti epilepsy medication helps, as does trying to avoid getting tired or stressed.
The only option for me was surgery or monitoring to see if it grows, and I've opted for monitoring.
I feel ok. Somewhat confused when I have a seizure, knowing something has happened but not sure what. The worst thing has been not being able to drive.
The Brain Tumour Charity and Headway have useful advice on their websites.
Let me know if I can help.
It's a tough time for you and your DM so be kind to yourselves and give yourself chance to process it.

Thank you, I'll have a look at both of thosw charities.
Can I ask why you've opted to monitor? Is it the risks involved? We've not even got this far yet so we don't know what her options are. Do you get any side effects from the seizures?

Yes my mum was diagnose about 15 years ago.

she has an mri every few years to monitor.

we decided against any intervention as it’s not malignant and surgery/ radio/Chemo may have caused it to spread, or caused worse side effects than the tumour itself.

she’s nearly 80 and it’s not caused any major issues, apart from frightening her new GP!

Yes my mum had the same, but wasn’t misdiagnosed like yours, possibly because she was diagnosed before Covid. She had radio surgery, with minimal side effects and is waiting to find out the results, which won’t be for some time, because it takes a while for it to work. I’m sorry that your mum and you are going through this. Before this, I always thought benign tumours meant you were okay. I didn’t understand that tumours can still grow and cause problems. Wishing your mum good luck that they are able to treat her quickly and effectively x

My dad had surgery for a macroadenoma. He was symptomless which was terrifying but got diagnosed by chance during an mri for another reason. His surgery was 4 years ago and he's been absolutely fine since.

I've never had an operation, Katyrosebug and I'm scared! It's hard to explain but I didn't really need to think about it, as my instinct was to avoid surgery if possible, and I do trust my instincts.
All surgery carries risk and I've heard of people having strokes while having brain surgery. The day may come when I have no choice, but for now, nope, surgery is not for me.

Forgot to say I don't really get any side effects from the seizures and unlike some people, absolutely no warning.
My eyesight is monitored as it's close to my optic nerve, and also in the area of the brain which processes (is that the right word?) taste and smell. I have definitely lost some of my sense of smell but I can live with that.

My mum had a non cancerous brain tumour. She had radiotherapy to stop its growth and then yearly monitoring. She was not able to have surgery because it was wrapped around a particular part of the brain. She was on a range of meds, some of which were epilepsy meds I think. They had an effect on her - she could be forgetful and wasn't as cognitively able as before. The first year was the worst but after that she was mostly her usual self. Sorry to hear about your mum and I hope you get more answers soon.

I'm so sorry to read this. My friend's across the street neighbour had this about four years ago. She was 67 and made a good recovery. I wish the same for your mum. 💐

This sounds so similar to my DH, 7 years since he was diagnosed. It is very heartening to read that your Mum is still doing well 15 years on! My DH is now down to yearly MRIs. He did have a course of chemo about 4 years ago which shrunk the tumour but otherwise has been stable.

I had a benign brain tumour- a cerebellar haemangioblastoma - about 10 years ago. It was fast growing and affected my balance and nausea centres so caused horrible symptoms. Couldn't walk in a straight line and constant vomiting. Took 6 months to diagnose as GP kept blaming it on HRT. By the time I finally had MRI and diagnosed it was an emergency as starting to impinge on the brain stem. Had surgery three days later. Surgeon said I would have been dead within a month without it.

However, recovered really quickly from surgery and was back at work two weeks after the operation. It was amazing how all the symptoms immediately disappeared after surgery and I felt great. No lasting effects apart from some numbness in my scalp.

Thank you all for your replies, I don't know how to reply to everyone. Its frightening how many people actually have them and live with it. My mum seems to think that they'll be taking it but I might need to manage her expectations a bit from the sounds of it, it's all so fresh and we literally have no information at all other then it's a meningioma and on her left side. She's had to give up work and driving for now, I'm hoping if they do take it out she'll be back to normal, but from the sounds of it this might be the new normal. It's good to know that some of you live with it and still have a pretty normal life though

My mum had a brain tumour, apparently it had been there so long it had calcified. She was operated on and had it removed 19 years ago and has MRI scans every few years now just to make sure it stays gone, but she's been great since.

Best of luck to your mum

DP had a meningioma. The surgeon explained it was one of the better ones to have as it's on the surface so not much digging around required to remove it. He had surgery to remove it and has been fine since.

I'm so sorry
My mum had was suspected to be a few mini strokes around christmas 2010. Had tests, scan finally in April 2010, found 2 inoperable, cancerous brain tumours. Full scan found the original cancer, a huge smoking related lung tumour, that had gone undetected for 2 years, that had also spread elsewhere. She passed June 2010 from the secondary brain tumours, she went from normal to severely mentally impaired to dead in 2 months. Found a diary after her passing detailing all the migraines ans auras she'd been having but hadn't mentioned.

A woman who was like a second mother to me also had a brain tumour, not cancerous, removed 5 or 6 years ago. Sadly as of a few months ago it has come back. Either the tumour itself or the originals removal caused her to have epilepsy, and lots of migraines. She has good days and bad, but removal again would cause worse damage and after effects than the current small tumour.

So sorry that your family is going through this 💐

Did her speech sound drunk most of the time she was talking? A just a rambled word once in a while?

I have read your posts. I'm not in the Uk but I identify for reasons that i wont elaborate on. Ask for an appointment with the specialist to get factual information.

Hi, it was very slurred, hard to explain but it was like she was drunk or talking too fast and not getting all her words out. Anyway, small update, she had her tumour out on 22nd August thanks to thr NHS who did a really good job I honestly can't thank them enough, she's mad a full recovery and came home on the Sunday so she wasn't even in for a week. If you were to sit and speak to her you'd never know anything had happened it's like I've got my mum back. She had the staples out on Friday and yesterday she had the stitches out 😊

@Katyrosebug what brilliant news. So pleased to read this. Best wishes to you and your mum.