can’t take it all in: diagnosed with... - Meningioma Support

Meningioma Support

638 members192 posts

can’t take it all in

Hugeveryone profile image
4 Replies

diagnosed with meningioma in October 2022. It’s pressing on my brain stem. Suggested by registrar to possibly monitor for a year, but if I really want it out sooner to contact him. My diagnosis came from having trigenimal neuralgia. Being treated with gabapentin for pain. Sadly over last 10 days pain has started to come back. I don’t know what to decide.

Written by
Hugeveryone profile image
Hugeveryone
To view profiles and participate in discussions please or .
Read more about...
4 Replies
tuppenceworth profile image
tuppenceworth

So sorry to hear what a worrying time you are having.

I would suggest you ask for another appointment to talk through options. The experts can help answer questions, just have a list of everything you want to ask.

Good luck

BrainBrain profile image
BrainBrain

It's definitely worth asking for another appointment to discuss further treatment options - there may be different drugs you can try, or it may be that surgery is the best option now. It's frightening but the doctors will only recommended things they believe will improve your quality of life.

Zhaleh_TBTC profile image
Zhaleh_TBTCAdministrator

Hello, it sounds like a difficult situation and I think many people in the community can identify with how you are feeling. I hope you can get some further medical guidance around this. Have you been allocated a Nurse Specialist at all? They can be a good point of contact for questions and concerns.

We also have some useful information on watch and wait here: thebraintumourcharity.org/b...

Our Step by Step guide would also be useful to have a read through particularly relating to the appointments you may have, to help answer concerns and arm you with the right questions to ask your healthcare team at your next appointment: thebraintumourcharity.org/b...

If you think it would help to talk things through with the Support Team, please do give us a call on the Support Line number 0808 8000004. We are here to listen, 9am-5pm Monday – Friday.

1968_Hiccup16 profile image
1968_Hiccup16

I had a removal of large meningioma from my brain stem 6 yrs ago . I had it for 10 years watching and waiting . Be guided by your surgeon and use all the resources available . Your surgeon is the best when it comes to weighing up the pros and cons ie time for surgery . I’m 54 snd leading a healthy active life post surgery . Waiting can do your head in so make sure you look after your mental health in the meantime , good luck

You may also like...

DVLA - 6 months post meningioma surgery

Hello! I am now six months post meningioma removal and have applied for the reinstatement of my...

Advice would be appreciated

my first seizure in 2022 i Got took to A&E and was diagnosed with a brain tumour which shocked...

Questions to ask Neurosurgeon

phone appointment, the GP told me that I had a meningioma and he'd referred me to a neurosurgeon...

Is it true that 3cm meningiomas don’t cause symptoms?

hoping for some advice. I have a 3cm left parietal meningioma and was placed on watch and wait. I...

2 suspected meningioma

mri my personal GP done it shows one suspected meningioma on either side 1cm and 2cm Does anyone...