Hi everyone
I have a meningioma and it now has oedema round it. I have been told because of it I will probably need a craniotomy after my next scan in June. I was told it will be a big surgery with risks. This is by a top neurosurgeon. How do Ideal with this. I’m just falling to pieces. I’m 64 so not young and not particularly fit. I can’t tell my family what was said because then I will be worrying about them.
Hi Nellam , sorry to hear you will have surgery . I’ve decided to have a benign meningioma removed in June (I’m 61) it’s active and has some swelling / fluid around it, as the tumour is pressing on the brain . It’s a worrying decision but I was assured by the surgeon that as these type of tumours are of the menses , so sitting next to the brain, not growing in it the risks are less, around 2%. Home after 5 days and Recovery 4-6 weeks - all going well. Of course it depends on your circumstances, where it is etc and good you have time to get fitter . I’ve discussed with my partner, kids and mum and it’s been good to have their support, although as you say , you don’t want to worry them but I’m sure they would want to be there for you.
If it helps , my friends mum in Oz just had a tennis ball sized one removed at 78 and is now fine, driving and life resumed .
I’m sure the brain tumour helpline is worth a call to help you through - good luck xx
Hi Sadie2022
Thank you so much for your reply. It is comforting to know it’s growing outside the brain and not in it. I think the reason I’m so anxious is when the surgeon said that after my next scan surgery is probably on the cards and it is a big surgery with risks.
He is a top surgeon so I just thought this is really worrying. I’m thinking of emailing his secretary next week just to ask for clarification on this. I can’t just be anxious and stressed waiting.
Do you mind me asking where yours is located? Mine is in the sphenoid wing behind the eye. The eye component of it is stable, but now growing inwards albeit slowly. It seems to be the swelling around it that is causing the concern though.
That’s amazing at 78 a full recovery! I do hope your surgery goes very well too. Please let me know how you get on and keep in touch.
xx
Hi Yes, I know , I was worrying about it all and then a good recovery at 78 cheered me up ! I know everyone is different but still always good to hear about positive outcomes . Mine is above my left ear, I think by the temporal lobe , and that it may impact my right side in future. It’s the swelling that has made them suggest surgery to me too , else it would be watch and wait .? The surgeons have to tell you all the possible risks to make you aware that these things are possible , help you make a decision, ultimately you have to give consent to have it done - but as said by others , they are so good these days and very experienced so although it sounds awful, often it’s very low 1-2 % . If you read the info for taking paracetamol you’d never take another one either :)!- I think the meningioma can grow all over the place, ( as in the menses that surrounds the brain - which is what swells when people get meningitis) but my cousin who is an anaesthetist said - if you have to have one , this is the better one to have , usually benign- 🤞. I had 2x breast cancer before and my surgeon told me I should be way less concerned about this ! Easy for them to say of course - not the ones having it done !
Good luck - I’ll let you know how it goes .. scary but I have every confidence in the surgeon.
Sadie2022 quiltingrammy
Thank you both so much for your replies. It’s interesting Sadie that if I need surgery and I probably will it’s for the same reason as you - the swelling - also your surgeon told you that you should be way less concerned about this surgery than breast cancer!
Some of my bone on my skull is thicker because of tumour (you can’t see it, doesn’t notice if you don’t know it’s there thank goodness) and I think maybe because of that surgery will be harder, I don’t know.
Where are you having yours done?
A bit belated - my surgery will be at Charring Cross and will take @ 4-5 hours . My mastectomies took around 6-8 hours so I have some experience of that and was back to travel/ working p/t within 3 months . I am sure surgeons are used to dealing with all kinds of different positions and differences- they told be I will have a super scan the night before surgery so they have a very clear image / map of your Inside your head and where every little thing is which they follow for the surgery - so I was quite reassured by that .
PS. As for others. A scan a few months after surgery then one a year for 5 years No driving for 6 months
I’m thinking of getting an electric bicycle if that’s allowed !
Good luck with the fitness - me too - swimming twice a week and walking
and Lytham
Hi ladies
Thank you for your replies. I had a scare this morning. I passed out in the bathroom! Probably for about 10 mins (had an accident but don’t remember).
My OH had diarrhoea for the last 8 days but is fine now. Just glad my head didn’t crack ( just as well it’s thicker at the side ( you can’t notice with my hair).
Good luck ladies x
I can understand how you can be so worried, but do not worry! I had a craniotomy in 2016, 1/3 of my meningioma is still there because it is wrapped around my carotid artery. My surgery went very smoothly and the downtime was minimal. I was able to take a family vacation six weeks after I had it done. My surgery was at UCSF in San Francisco and my neurosurgeon is world-renowned. I know you will bounce back, so do not fear. Wishing you all the best.
That is good to hear, very encouraging . Do you have regular scans still? I’m trying to be positive. I know that what is making me anxious is when the surgeon said this would be big surgery. He is a top neurosurgeon, so I just keep thinking that for some reason this one is very difficult.
Thank you again - it’s is wonderful to hear such positive stories.
Annual scans. Two very small new tumors appeared last time and I had gamma knife radiation on them to remove them
Hi Nellam Biggest part of waiting for surgery is controlling the anxiety around the ifs and buts !! The hardest part of surgery
I had a big 12 hr survey 2016 / 4 days in ICU / 8 days on the ward . I probably let mine go for too long before having surgery at 48 hence ended up with more side effects but can say I was extremely well looked after and loving life without brain fog . Preparing yourself physically and mentally has a Big impact on your recovery . I did yoga daily / walks in the bush and meditation which I found a really important skill I used daily in my recovery . The surgeon has done their training and trust is imperative / handing over control as long as you use this time to prepare your mind And body . It is a very anxious/ frightening time so take care . I have a very full life that I wouldn’t have had had I not had the surgery . Good luck
Thank you so much for sharing your experience. I’ve decided to get fitter beforehand and to try to stay positive.
Do you mind me asking where your tumour was and the side effects you are experiencing?
You’re right, you have to put your trust in the excellent medical team and have faith that you will be ok.
That’s fine . My meningioma was on the brain stem wrapped around my facial nerves . It was quite large snd could not be removed by other means apart from surgery . Now I only have right sided mild facial palsy , mod double vision , nil right sided peripheral vision and total loss of hearing from my right ear due to the entry of the surgery . This I was loosing before surgery . My balance has returned . The brain fog has completely gone . I was tired for about 10 months afterwards . They say it takes a month to recover after one hour of surgery . I was back working after 10 months . My vision held me back as the facial nerve was damaged from the surgery and tumour otherwise I would have been back earlier . Every side effect is different for different positioned tumours . Good luck
DVLA - 6 months post meningioma surgery
Meningioma diagnoses
just had a craniotomy 
Watch and wait
Stopping Levetiracetam after benign brain tumor removal
