I'm relatively new here - trying to cope!

[touring]

I'm retired from full-time work, doing voluntary work to keep occupied. I was diagnosed with a meningioma 18 months ago but feel I'm not getting the full information I need. I know the tumour is growing, is in an awkward place for surgery, but not suitable apparently for radiotherapy. I sometimes feel very much on my own as I don't want to bother family and friends with my concerns. How do others cope? Any help would be appreciated.

[sophy456-]

Hello I was diagnosed with a Meningioma approx 3 years ago

I have a MRI every year to see any growth in tumour and has so far tumour has not grown

I have been told there is no way of knowing how long I have had it apparently very common in women my tumour is posterior fossa which is back of the head

I have an amazing neurosurgeon in Cardiff South Wales and every faith in her I do hope you get the treatment you need and would advise a second opinion which is what

I did try to stay positive and let me know how you get on take care

Marcia

[touring in reply to sophy456-]

Hi there,

Many thanks for your reply - glad to hear your tumour is not growing. I had another scan on Tuesday and am awaiting an appointment with the Neurosurgeon: hopefully not a long wait, and if I don't get some satisfactory answers I am going to ask for a 2nd opinion. I am having scans every 6 - 8 months and will probably need surgery at some stage - my tumour is pressing on the brain stem, which causes some unpleasant side effects! Trying to keep positive! Take care, Rae

[Maisiesi1959 in reply to sophy456-]

Hi Sophy456, I have just recently joined this forum to see if I can get further support or information.

I have been diagnosed with a posterior fossa tumour which is 5 cm in size, I have opted to have surgery for the removal of this in 3 weeks time.

Apart from headaches and slight blurred vision I have not had any other problems and have been carrying on as “normal”, Obviously I am worried about having the surgery and want to recover as quickly as possible but know that I will have to take this steady and allow my body to recover fully but have remained positive and know that I have my family and friends around me who have all offered their support.

I have met with my neurosurgeon who seems great (Queens Medical Centre in Nottingham), I just want it out and to be able to get on with life - did you have to surrender your driving licence at all? I’m not expecting to get straight behind the wheel but I would like to be back driving as soon as possible.

Do you have any tips/advice that helped you after your surgery and also to combat any boredom when stuck at home.

Take care

Jayne

[touring in reply to Maisiesi1959]

Hi there! Hope you are ok. I have had surgery and all went well - I was home after a week - and I think the build up to the operation and the thoughts of the problems that might happen were worse than the event itself! The support from family and friends was a great help, and starting physio straight away soon helped with balance issues.

Following the surgeon's advice I let the DVLA know and they were quite happy for me to resume driving as soon as I felt confident enough. Apparently, where the tumour is located is a major factor in their decision making (something I didn't know beforehand) and if the GP and Consultant are ok about it there's no issue.

I hope all goes well for you - a positive outlook is a major boost - and it sounds as though you have a good support network. One thing to remember is the need to be patient - you may require follow-up treatment depending on whether or not the surgeon managed to remove all the tumour and you may have some facial numbness which can take months to

seem anything like normal again!

If the weather is good you certainly don't need to be stuck at home. Get out for a walk - it does wonders - and try to keep life as normal as possible. You don't say what you enjoy doing but, as long as you don't want to run a marathon straight away, practically anything goes.

Chin (s) up! and all the best.

[Maisiesi1959 in reply to touring]

Thank you so much for your reply it certainly helps speaking with someone who has been through it. My tumour is posterior fossa like yours and i have been lucky enough not to have suffered anything apart from headaches so fingers crossed i wont be off driving too long.

I enjoy tap dancing but due to lockdown it wont be resumming until Sept so im hoping that i can rejoin then.

I work in a school office so my job although can be manic is not a physical one, and we have got the summer holidays coming up so that will give me further time to recover. I do like walking and am quite fit (for my age 😂) so im hoping that will be one thing i can do almost straight away.

Thsnk you once again for your message

Jayne x