Mum recently told she has 2.5cm meningioma af... - MeningiomaUK

MeningiomaUK

Mum recently told she has 2.5cm meningioma after being unwell for months

soniaackerman
soniaackerman

Hi all, would be great to get some advice. My mum was diagnosed with a 2.5cm meningioma above the temporal lobe before Christmas. It was initially missed back in March on a scan where it was 1cm. She has many symptoms daily and doesn’t go a day without headaches.

We were pretty much told she has one then left in limbo, we know they want to do a epilepsy test (which is approx 5 months away after we rang to inquire, the neurologist said she’d see us again after then).

We just felt they’d be doing something about it quicker with mum being off work unwell from February and having symptoms most days, and it going from 1cm to 2.5cm in 9 months?!

Any advice, information or experiences appreciated, as it’s new to us all.

Sonia

9 Replies
oldestnewest

Hello im sorry to hear about your mam, I had a meningioma removed almost 13 years ago and the only thing I can say is they musnt think its dangerous or high priority or they would be seeing her quicker, so in a way thats good news for her, wishing you all good luckx

I was misdiagnosed for 3 years and was told I was depressed. I wasn’t.. I then had a seizure in 2014 and found out I had a 5cm meningioma (right frontal) which was removed successfully ... After 6 months I felt back to normal.

I have MRI scans every 2 years now.

I hope your mum gets seen soon Hun

Lytham
Lytham
in reply to Ladybex

Hi pleased to hear youre doing ok ! Its alot to get your head round (excuse the pun) isnt it ? :-) x

Ladybex
Ladybex
in reply to Lytham

Thank you... but I had 3 years of Dr visits complaining of headaches, forgetfulness and not socialising which was not like me ... my family thought I was just getting old ... anyway thankfully I’m hear to tell the tale and I would urge everyone to insist on referrals and then chase up the Consultants Secretary for appointments ...

best wishes

Lytham
Lytham
in reply to Ladybex

Wise words ! At first I was diagnosed with vertigo and given sea sick tablets but luckily the gp re thought it and offered me an mri scan where they found two meningionas . It was a surprise to both of us , thank heavens he sent me ! :-) x

Ladybex
Ladybex
in reply to Lytham

So good to hear you are ok now Lytham ... take care 😊

Lytham
Lytham
in reply to Ladybex

You too x

Thankyou for sharing. So glad you were seen after your own persistence I’m sure with drs, and you got your diagnosis and surgery. Three years, that’s terrible!!

Hope you continue to do well.:)

We are no further along and it is so frustrating. Neurology back in December wanted an EEG done and said she’d see mum after. We pushed for that to be done as it’s through another hospital, it was carried out 7 weeks ago now and apparently results aren’t back yet. Mum has headaches pretty much everyday, and then there’s bigger ones that completely take her off her feet for days. She’s still being a little forgetful and doing random things every so often that typically wouldn’t be like her. These symptoms long standing, and made more sense when they advised they missed the tumour in itital scans. All made a lot more scary as she’s now having tests to see if she has an endocrine tumour also. But I can’t help but be baffled by the growth of her tumour and the hospitals lack of speed/care. We keep being told by other drs and initially by the neurologist that they are usually benign and slow growing/don’t change much in size year to year, and mums grew 1.5cm in 9 months. It’s just all so worrying when you see how it’s affecting her daily, and that the growth in a short time doesn’t add up to ‘slow growing’.

Hopefully with some persistence we will see the neurologist soon and start moving forward with symptom management etc.x

I do hope your mum is soon to be given the right care..

my tumour was 5cm and grew very quick .. I was told the antibiotics I was given for an ongoing urine infection NITROFURITON didn’t help this ... so be wary of taking some antibiotics ... best wishes