I've been lurking and reading the very brave and positive stories here for a while but have decided to post and ask for advice if I may.
I'm 72 years old, active, and in good health apart from various arthritic bits and pieces here and there, but nothing which stops me doing a lot of walking and up and down stairs.
I was diagnosed by incidental finding with a 1cm x 1.3 cm benign meningioma last October. I had a contrast dye MRI in the September due to an unrelated very bad fall in the previous April. Wanted to rule out various other things. So I received a letter telling me everything was looking good apart from finding this small meningioma which was situated 'quite close' to optic nerve.
I've zero symptoms and have now had 2 vision checks which have come back as 100% score for peripheral vision on both eyes. I keep getting postponements of phone appointments with the neurosurgeon and don't even know if I'm going to have another MRI this year.
I was told that at my age, the last thing he wanted to do was operate, and given the lack of symptoms he may well do another MRI and if no change, then just tell me they would check every 5 years. He seemed very good, took plenty of time, and told me to try and forget about it, but keep with the vision checks as they were the important things.
Obviously I'm very concerned, especially as my husband is in poor health and has been in and out of hospital the past year. Honestly can say I wish I'd never had that fall, had the MRI or found out. I suppose though that knowing means that any symptoms would be acted on more quickly?
Am I being overly anxious? Thank you all so much for reading.
If it affects your vision in any way contact the surgeon immediately. Everyone can have them and don’t even know about it when they pass away. I’m glad you’re in the system if anything were to change. From what I understand of them if under 3cms and no symptoms at all they leave them alone. There are a lot of risks involved with any surgery and this one comes with others too. For now don’t think about it. Continue with your vision checks and for peace of mind ask if you’ll be having an MRI this year! Look after yourself and you know where to come for a chat. 💕
Hello Paper 2021 and thank you so very much for your lovely reply. I've just called the neurologist's secretary who says that I'm due for another MRI in November with results in January. I've also got the photography people doing more photos in November.
So can't complain about the care I'm getting. I do know that there is no 'canalisation' as he called it but it is very near to optic nerve .
I read that they are slow growing - presumably even more so at my age (72) - do they always grow or can they really just remain same?
Reason this has totally got me so wound up is that my husband is very ill (liver disease) and has been hospitalised 10 times in just under 2 years so my stress levels tend to be through the roof!
Thanks again for your very positive and supportive reply. You don't know how comforting I've found it.
Hi your more than welcome. I’m doing okay better than others. Unfortunately life is not the same as it was but I’m learning a new way of life. Sorry to hear about your husband. I have been told they are very slow growing or can remain as they are. Try not to worry. Hopefully it won’t ever give you problems and you stay well.
I don't think you are being over anxious at all, its obviously come as a big shock and even though you have no symptoms being told not to worry is not the easiest thing to do. Despite that I really would advise you try not to
I was also diagnosed with a meningioma by complete chance when I was having a MRI for something else. The size is just a little bigger than yours but I also have no symptoms but its very close to my optic nerve in my right eye. I am 45 and was understandably terrified when I first found out. It grew quite aggressively for the first three years and it was looking like it may need to come out but this year no growth at all.
I have a new consultant who is excellent and just wants to monitor it once a year, I have my next scan in January so its just a case of trying to forget about it as it has no impact on my life what so ever and then see what happens next year.
There seems to be no rhyme or reason as to why they grow and why they don't, they are generally really slow growing so I am being positive and hoping that my growth spurt has finished and its done. It will always be there but providing it behaves I am okay with that.
Like you I thought to start with I wish that I had never found out but now I guess I am glad, not glad that its there but now we know I am in the very best situation. Its being monitored and should it grow it can be acted upon rather than something far worse out of the blue years down the line.
It sounds like you have enough on your plate so keep focusing on the positives and fingers crossed with careful monitoring all will be okay. I hope that your husbands health is getting better.
just want to let you know I had my tumour for 12 years that I know of as mine was also discovered accidentally. Every year after that I was monitored with an annual MRI and for 8 years the size didn’t change, the neurosurgeon said they can sit dormant for years.
After the last 2 years though of substantial growth it was removed in April this year and I am recovering well, I’m 52 years old
I wish you all the best and it does get easier each year to put aside the fact you have something growing in your brain and the doctors certainly make it easier by acting as if it’s no concern at all
Morning and thanks a lot for your encouraging reply. Isn't it weird that after so many years of just sitting there and not moving that these pesky things decide to have a growth spurt?
I'm 72 and so the idea of a growth spurt years down the line requiring surgery wouldn't thrill me, and my surgeon did say that he hoped I die with it rather than have to go in and operate when I'm older. I've read that they can be hormone related and wonder if menopause sets them off in the first place?
So pleased that you've had it seen to and are now well into recovery mode. Wishing you well for the future.
Hi there, it is difficult once you find out it's there to forget it, but as it's giving you no symptoms it's probably for the best to try and carry on regardless!. I am 57 found mine at 4cm so had surgery last November, the surgeon did say if I was older they wouldnt have operated.
Enjoy all the things you love 😀 and that make you happy
My surgeon said he really didn’t want to be operate (me neither) but surely regardless they can’t do nothing if you have symptoms which are either causing loss of vision or severe pain?
Not a happy prospect - I need yo ask them about this as I don’t want to be left in agony or to go blind. Very worrying
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