Has anyone had a brain tumour?

[secondchapter]

Waiting for a neurosurgeon referral for a meningioma found after a MRI ordered by the Opthalmologist.

I have a colleague who has a slow growing meningioma. She goes for regular scans and will have radiation if/when it starts causing symptoms, then surgery if that doesn't keep it down. Hers isn't malignant.

Try not to worry 9easier said than done I know) until you have seen the neurologist and have more info.

That is the problem, in in complete limbo until I see the neurosurgeon. The tumour is pushing my eye forward and affecting my vision, the opthalmologist thought they would want to operate but couldn't answer any of my questions.

Meningiomas are almost always benign but get operated on because they impinge significant structures eg your eye. I don't have specialist knowledge but as a GP have seen many patients who have had different surgeries for meningiomas. The type of procedure and it's success totally depends on the position of the tumour and what techniques are available to deal with it. You will get proper clarification from the neurosurgeon. I'm sorry you are having all this uncertainty and worry. Best of luck.

I had a meningioma, but a spinal one. I had surgery exactly one year ago today. My main symptoms were not being able to walk very well, they even gave me a tripod to use in the ward.
Four weeks after surgery I was back at the gym and I'm back to normal. I'm very grateful to the wonderful care that I received thanks to the NHS and I just need a yearly MRI scan. Best wishes

I was diagnosed with a meningioma earlier this year, found after an MRI, it completely freaked me out and still does actually in some dark moments, but I've seen a neurosurgeon who confirmed that unless there are significant symptoms and/or it is growing, they are usually left alone and monitored.

They are very slow growing, usually around 1mm a year, usually benign and I'm told that I have probably had mine for many years and didn't know it and it was only because of the MRI that I had because of some neuralgia symptoms that it was found!

Mine is going to be left as my symptoms don't cause me any problems, but we did talk about surgery or gamma knife to treat it should it be necessary at sometime in the future.
Best wishes

My dad has a macroadenoma (pituitary) spited totally by chance during an mri for something else. It has now started effecting his vision as it's close to the optic nerve so he is having "minimally - invasive" surgery.

Should add that it's benign. Often they're left alone if not causing symptoms.

Do ask about the possibility of gamma knife treatment. Best of luck x.

I saw the neurosurgeon on Monday, he wants to operate because of the impact on my eye. Not sleeping now, it is a lot to take in. I've got to go for pre op on Thursday, but ns says it will most likely be about Christmas before I have the operation as it will be a whole day in theatre with two surgeons and there is a lot of planning and 3 d modelling involved. Tumour is bigger than I thought, the bone on the left sphenoid wing measures less than 9 mm and on the right it is 36 by 48 mm. Finding it really hard to concentrate. Thank you for all your best wishes. This is scary right now. Surgeon concerned about optic and trigeminal nerves and spread into skull base. It is likely he will have to leave some in my skull and I will maybe have radiotherapy to clear this up.

Sorry to hear that I'm not surprised you are very scared but the surgeons are very good and do these operations successfully all the time.

There was a thread on here a month or so back and the lady recovered much more quickly than I would expect.

Sorry you have to wait, often waiting is one of the worst parts, distraction helps but its still there. Try to get some sleep if you can and take care.

Thanks penguinsrabbits, I have been up for a bit, put some washing in, watched some news. Not designed to be restful, the news tonight. Will have a hot drink and try to sleep again in a bit.

Two! One benign and one malignant and the small matter of 25 years between them! Anyway that's not meant to happen!

They had to take both out as emergencies though whereas it sounds like you'll have time to prepare which is a double edged sword really.

The benign one I was at school and back within a week and the latest one back at work as soon as they had taken the clips out which was around 2 weeks. They know what they are doing with recovery, really. Other than the food...

And yes as PP said the surgeons are fully, fully amazing.

Hi namechange two is unlucky! Recovery send very quick, did you have bone involvement? Ns says 6-8 weeks would be the earliest I would be back at work but he has patients who have taken 6-8 months. I've told work, manager is supportive.

Hi OP, sorry to read your situation there. I'm using an old name I had on here once. I had a menngioma removed, left parietal lobe twenty years ago, size of a small apple. I was misdiagnosed for years prior. I managed to return to work for about six years ( lecturer) but I developed epilepsy and it's still not controlled, so eventually had to give up
Even so long ago, whilst the surgery was long, it was pain free and an amazing job done by the surgeon.
I've just been diagnosed with a recurrent tumour in the same place which is relatively small and on a watching brief.
It really is a shocker to get the news and I'm so sorry to hear that, if I can help support at all do let me know. I'm in North West.
Have you been in touch with any support groups at all? Your hospital should be able to sign post you. All good wishes to you.

@Namechangeforthiscancershit So sorry to read your story also.x

Do you mean was the tumour hitting the bone (it wasn't) or did they need to take out a lot of bone to get to it? (They did!). I still have 3 plates in my head which are sometimes uncomfortable and it's been 4 months.

They always give you the doom and gloom about recovery to manage your expectations but lots of people find it much better than they think. Cross that bridge when you get to it, but supportive manager is great and you will be really well looked after

@EdInjury thank you, I consider myself very lucky at the moment!

Epilepsy on top of the surgery seems very very unfair. I know you just have to adapt and roll with the punches, but it would be nice not to have to for a bit wouldn't it...

Oh sorry and I meant to say I know so many people watching and waiting and I think it can be so much harder psychologically than the medics realise

My uncle had a brain tumour removed in 1988, he's still going strong at 80! Try not to worry too much, it's at the treatable end of the spectrum

I am grateful that it is most likely benign and treatable, but that doesn't stop me being scared about going through the treatment! Storys of survivers still going strong after decades are helpful and glad you are doing well 4 months along @namechange. @Edinjury sorry to hear of your epilepsy, 20 years before recurrence is good, and I suppose you were having annual monitoring already? I know checkups are anxty, I am bad enough with my annual mammogram, which I have today. My ns is going to try and put me in touch with one of his patients who has had a similar op to the one I'm going to have. I have found a Facebook support group m...uk and that is good but very big if you know what I mean. I've asked a few questions on there and got supportive replies but not continuing chat. @Edinjury I'm not so far from the north west, I'm being treated at Leeds.

Hello again, I finally got some sleep!
I think the psychological side and the " what ifs" and scenarios you play through your head are worse than the surgery itself.
Leeds is an excellent place and also you are twenty years ahead of me for state of the art treatment. Also I imagine the support is much improved afterwards. Not much consolation I know.
It's common to get fatigued fairly easily after your op and I know it's the loneliest place to be some days.
I found talking to others who had been through it the best help. Two great places also to talk.
meningiomauk.org/
www.headway.org.uk/
Headway have a really lovely group of people on their helpline who"get it". They deal with all sorts of brain injury.
PM any time you want if you need a hand hold and will look out here.
Everyone in my thoughts here. xxx

Headway UK are

Oh yes, to add, I was having regular monitoring and the recurrence was picked up on my mri last year. So they will keep a good eye on you. x

Thanks @ed it does help to know that it is a well oiled machine, the scary bit is that although it was slow to get going, they have now cranked it up to fast with one appointment after another. Not sure how I can up my fitness before pre surgery appointment tomorrow, but will try to get fitter/lose weight before surgery.