Meningioma diagnosis

[Bests]

Hi im Bests. I have very recently been told that I have a 3cm meningioma front right.. So scared not sure what is going to happen next.

[Andy_TBTC]

Hi Bests - try not to be scared, as meningioma’s are surprisingly common, are usually treatable and many people with them go on to lead normal lives.

Everyone is different however, and your outcome will depend where it is, how fast it is growing (low or high grade) and it’s impact/symptoms.

Mine was 7cm and back right, and was all removed, all clear since.

Your neurosurgeon team (whoever told you about it) should tell you what choices you have for ongoing treatment. Best wishes.

[Bests in reply to Andy_TBTC]

Thank you Andy, i have not been graded yet all i know is its front right. Your reply has helped me to feel abit more optimistic. Glad to hear that you have got through OK 😊🙏

[Andy_TBTC in reply to Bests]

Hi - no problem, I remember how scary it was going from zero knowledge of brain tumours to surgery in under 6 weeks!

I found The Brain Tumour Charity website really helpful, and joined the Charity’s closed Meningioma Facebook group, which helped me understand and share experiences enormously.

[Bests in reply to Andy_TBTC]

Hi that was quick having the surgery. Where you having bad side effects? And how long ago did you have it. All iv heard from is my GP to tell me the results of the mri although I had a ct scan done 7 weeks ago too which did reveal it then.

[Andy_TBTC in reply to Bests]

Mine was 4 years ago, and I was rushed to hospital with severe symptoms (They thought I was having a stroke) where they discovered my 7cm m, which was in the process of displacing my brain (which would have soon been fatal) so it had to come out straight away.

My story is the the Charity website here if you’re interested thebraintumourcharity.org/m...

[Bests in reply to Andy_TBTC]

Thanks Andy, i read your story and it gives me hope. Well done to you for getting through and for sharing. I realise constantly worrying about it won't help me. Guess I have to wait until I hear back from the GP as to what the neuro surgeon thinks, just hope they don't take too long. As i live alone it seems more frightening. Thank you.

[Andy_TBTC in reply to Bests]

Given the surprise of your diagnosis it’s hard not to worry. When you get a plan of what happens next should help.

If you ever want someone friendly and understanding to chat to, the Charity has a support line for exactly that purpose (you can call them on 0808 800 0004 - although I think they are closed for Easter). Best wishes, Andy (Volunteer)

[Bests in reply to Andy_TBTC]

OK thanks so much. Yes i think they are closed for Easter.. And yes I expect once I know what the plan is things will start to be abit less daunting.. I survived a stage 3 breast cancer in 2010 so hopefully i will be able to survive this too.. Thanks again..

[Lytham]

Hi I had a 3cm meningioma behind my right eye too, they removed it 15 years ago and touch wood all is well with the world, stay strong! x

[Bests in reply to Lytham]

Thanks for your reply it gives me hope. Glad to hear that you got through it 👍x

[Lytham in reply to Bests]

Thank you! It's absolutely marvelous what they can do, it all seems pretty routine to them. Hopefully your consultant will work out the best plan going forward for you, try not to worry too much, that gives us headaches! x

[Bests in reply to Lytham]

OK thanks il try not to worry as it doesn't help. I hope i get a plan and some answers soon. Did it take you a long time to recover after the surgery.? hope you don't mind me asking you x

[Lytham in reply to Bests]

No I don't mind at all, If I remember rightly I was supposed to be off work for 3 months but went back after 2 months but only part time. Hope you get your answers soon, it's good that they're not rushing you in, mustnt think it's urgent? x

[Bests in reply to Lytham]

Thanks for reply.. Not sure what they are thinking i got results from a mri after having some symptoms of dizziness, loss of hearing and some numbness in foot and lower leg. So got results a week ago, apparently its a calcified meningioma.. Quite large but that's all I know at the moment hence me being scared stiff and its front lobe so much i don't know as yet.? What about you did you have symptoms and get rushed in... Its great to hear that you are ok now x☺️

[Lytham in reply to Bests]

I was having dizziness and blurred vision, after mri it turned out I had two, they removed one at James Cook Hospital but couldn't get the other one so sent me to Sheffield for steriotactic radiosurgery (gamma knife)

I'm not sure what the calcifed bit means? I got the impression my 3cm one was quite small? The girl in the next bed to me had a grapefruit sized one, bless her !

They didn't rush me through apparently they only grow very slowly and wouldn't be doing much for the immediate future x

[Bests in reply to Lytham]

OK thanks that's promising... Calcified, according to the gp meant its being there for along time. Hope to get some more information later this week as the gp said he was contacting a neuro surgeon.. My immediate thoughts where that my life was over but im feeling alot more optimistic now. Thanks for messaging me x🙏

[Lytham in reply to Bests]

I know quite a few people that have come through it fine, just another one of lifes little hiccups to deal with, you'll be fine hun, good luck, keep in touch and if theres anything I can help with just shout up ! I'm around most of the time on the Weight loss forum, but that's another story! x lol

[Bests in reply to Lytham]

OK thanks so much.. I will keep in touch and let you know what is happening. Ok good luck with your weight loss journey. I hope you didn't get too many Easter eggs in that case 😅x thank you

[Lytham in reply to Bests]

Ha ha ! I got one but I was so good and gave it to my other half! x

[Bests in reply to Lytham]

That was good then, well done x☺️

[Lytham in reply to Bests]

Ha ha thanks, you take care and look after yourself! x

[marceag1 in reply to Bests]

I too have a calcified meningioma over right frontal lobe. Mines is 2 cm

[marceag1 in reply to Lytham]

I have a 2 cm calcified meningioma over my right frontal lobe and my doctor believes it is too soon to have any symptoms. But I am having headaches and memory loss. Do you believe it is too soon to have symptoms?

[Lytham in reply to marceag1]

Hmm... I'm certainly no expert but mine was 3cm and I was getting symptons. The way the consultant explained it to me was, if it was on your arm it would just grow out over and wouldn't be a problem but theres not much room in the skull and anything else in there is putting pressure on and that's what causes the problems. Hope that makes sense and helps x

[marceag1 in reply to Lytham]

Thanks for replying that truely makes sense

[Lytham in reply to marceag1]

Good luck hun x

[Molly1987]

Hi bests I had a left wing sphenoid meningioma and had a craniotomy they removed 33mil and said it was the size of a small satsuma this was 5 years ago I now have yearly MRI and there’s been no change I’m a healthy well person

[Bests in reply to Molly1987]

Hello Molly1987, thanks for your positive reply. Good to hear that you are healthy and no change. Im waiting to hear back from the GP as to what the neuro surgeon thinks so I don't know anymore about my meningioma or what treatment they will recommend. Im doing my best to stay upbeat and optimistic. Thank you so much for your support... Bests 🙏

[jasonoliv34]

HiI understand these are scary times, however, this is life after brain tumours. I would recommend you read my book on advice for you and your family to overcome this illness; fightbackbt.com/.

All the best, Jay

[Bambilino]

Hi there. I too was diagnosed 2 years ago with a 2.3cm x2.5cm meningioma and where it is can't be surgically removed. It hasn't grown or changed I the 2 years. It's non life threatening and I was told get on with my life and enjoy all the things I do even can horse ride if I so wish. Nothing off limits or restricted sports/exercise wise. I just need to start doing some exercise now...ha ha. I had 6 montly brain MRI's and this year was told yearly is sufficient. All in all. I forget I have it sometimes. I hope this will be the case for you too. Best wishes. 👌