Diagnosed with Meningioma (brain tumour)

Hi everyone, its my first time here so please be gentle!

I was diagnosed with a Meningioma  the week before last and struggling to come to terms with everything!  You always think it won't happen to you don't you?  I am 35 with two small children and having a very hard time dealing with it at the moment.

My surgeon said they are usually benign but it has gone into my jaw and will be a big operation to remove and I may need radiotherpy if they can't get it all out.  I have had no symptoms so was lucky it was somewhere it can be seen (just below my right temple) but it is all such a big shock and I keep bursting into tears as I am trying to carry on as normal with it hanging over me all the time!

How did everyone else deal with your diagnosis?

x

  • Hi Purple, I opted to have surgery as like you I was worried about it getting bigger!  Recovery is slow at first as it is a big operation, you need to take it easy in the first few weeks.  I was back at work in about 10 weeks (office based job/part time!) and I am pretty much back to normal now, I have been very lucky!

    I had no lasting problems (memory is rubbish but that might be my age and having two young kids to deal with ;o) )  

    Everyone is different and you need to take time to get through it, but you will be in safe hands, the surgeon knows what he is doing I am sure.  Stay positive - I think that is important!

    If you are on Facebook there is a very friendly and helpful Meningioma group www.facebook.com/.../ 

    Please ask any other questions - I know just what you are going through.

    Charlotte xx

  • Thanks so much for the reply. It's great to hear you have done so well. 

    Very scary and concerrns over getting back to work or being left with a disability or the 1001 things going through my mind.  As. You say positive thinking. I'll check out that Facebook group thank you for that information.

     

    Take care. 

    L xx

  • I know it is terrifying!  My kids were 6 & 2 when I had my operation and I was so worried about not being able to look after them!!  

    Stay positive, please do join the group - it really is a big help!

    Charlotte x

  • I was being treated last year for stomach acid

    li was being sick everyday I November my doctor

    Callef the ambulance and eventually I was taken to 

    hospital where no was diagnosed with a melogna

    on my left side next to my ear

    they put a stunt in and operated on 24th december

    most is out but side effects swallowing problems

    cant walk dropped left eye waiting to go to rehab

    i just turned70 so I suppose I've had my life!!!!!

  • I have posted my story but not very well 

    I was being treated for stomach acid

    but I was losing my ability to walk I have no memory of what happened next but next thing I knew

    was I had a stunt put on my brain for drainage

    they were not sure what I had but the scan showed a large mass and they operated a month later

    and found I had ahemangeoma

    most of it is out but while in hospital I had a brain bleed 

    so another operation my side effects are not too good 

    my left side has dropped anklen eye mouth

    have aspiration and can only walk with a Zimmer frame 

    eaitink to go to a rehab centre

  • the rirst time i was diagnosed was in 2013 ( age 51)i made the decission to have it removed by surgery. It went well and was a sucess. unfortuneatly  i lost all sense of smell. this was due to it being attached to my nasel passages.  So i go through life without smelling a thing.  More recently they found another in the same area.im now 59, once i had a consultation, the oncologist said i had a culster of menginimas in the cavity left by the removal of the large one. the best course of treatment is radio therapy,  i was scared about this thinking if they miss i will wnd up with a brain the size of a pea.  But now 2 weeks into therapy im more relaxed. i have 6 weeks of 5 days a week radio therapy to have.  i was worried about the mask fitting and wearing. it is very tight but not half as bad as i thought it would be.  mind i look like R2D2 wearing it. but i close my eyes once therapy starts it only lasts 4-5 minutes then im out and on my way home.  so its not so bad. had a slight sickly feeling a couple of times once im finished and im told my hair will drop out as its near my hairline. so far still got my hair.  of course im very tired but i can go home to bed. So im hopful this is the last time i will have this problem with anything to do with my brain. After a brain heamorrhage in 2011 followed by  a stroke then turmour removal in 2013 then rehabilitation to get me up and about again. and training to walk with a white caine as im now rgistered blind and have partical sight. now this i wonder where and what will happen to me. so please god let this be my last hurdel  im dealing with Vascular dementia too. Early stages. thats left over from the heamorrhage and stroke. because i now have a perminant brain injury.  I know what you mean when you say your tearful.  but you have to grab this by the throat and say your going to beat it. be strong and positive. Good luck. i know how you feel. sending you best wishes.