Down in the dumps :-(

After having a brain tumour removed in May 2013 I have been left with severe balance issues, (having physio) hydrocephalus(fluid on the brain, which is under control as was fitted with a permanent variable lumbar shunt) and facial palsy on my right side (mouth has dropped, eye doesn't blink or close, cannot fully smile) you don't realise how much your face tells a story. It's only when you lose your facial expressions that you realise people read you from them. Before the operation I was quite an attractive and outgoing person (sorry to seem vain) but now I feel very conscious about how I look. My confidence is at an all time low. Also worry about eating out, conscious of food being round my mouth or dribbling when drinking as there is numbness on the facial palsy side. When talking to people they seem disinterested as articulating myself can be difficult sometimes, I forget words, speech is slower, so people tend to finish sentences for me or just lose interest, which upsets me. Im becoming introverted, Some days I just want to stay in bed, but can't as it wouldn't be fair on my family or my dog (she needs exercising) so I force myself to get up, get ready and go out. I do have a few good friends but they work and have their own families so it's a little difficult to get together. I can't drive because of my balance and can't walk too far, so getting out and about is proving a mission too! I would love to make new friends/acquaintances that are in a similar situation or be given advice as to what I can do to make myself feel better about me. Any response would be lovely. I live in the Essex area of UK and ideally would love to set up a group for meetings, coffee mornings/afternoons and chats. Anyone want to join me? Really would like the support. Can be lonely sometimes... Look forward to any response. Take care all :-)

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14 Replies

  • Hello and sorry to hear you are having such a difficult time, you will find there are a lot of people who can relate to how you are feeling. It might be worth contacting BANA to see if they have a local group: - I don't think you specifically have to have that kind of tumour to go along to one of their groups. The closest one we have at the moment is in East Grinstead which isn't ideal when you can't drive although the station isn't too far from the hospital. We are hoping to set up a group in central London later this year and another in Norfolk. This is the link to the East Grinstead group: There is also a Facebook group which is very popular called Courage to Smile, although you have to keep an eye out for a message from the admin team in your "other" folder of you inbox because they check everyone has facial palsy and is not a journalist or health professional, you do need to reply to them before they add you to the group. This is the link to that group:

    I hope this gives you some ideas to start with and that more people come forward who are local to you.

  • Hi I had a brain tumour removed in March 2011 and am left with facial palsy, eye problems, balance still not quite right and it was two and a half years before I could drive again. The Courage to Smile group helped me so much and there are loads of people on there who are or have gone through what you are going through now and they all support each other especially if you're having a down day you can go on there and vent all day and everyone listens because they understand. At the moment I'm having botox in my face to help with the numbness and it also helps keep my mouth straight. I still drink with a straw as any liquid spills out the corner of my mouth and I get in a panic if I have to eat out but hey we're both still alive and hopefully you'll improve as time goes on, I never thought I'd get this far when I first had my tumour out. Pam

  • Hi pam. Thanks for the positive words. I am grateful for what I have achieved so far. I have come a long way (I caught pneumonia and nearly died) still have a long way to go. I just have wobbly moment sometimes, guess you do too. It was quite an intrusive operation. Everyday I'm learning to adjust to the new me. Just get a little frustrated and upset sometimes because I can't do what I used to. I get annoyed with myself too, worrying and stressing about what other people think and staring at me. Just wish I had the confidence I used to, suppose it'll come, I hope. Each day brings a different outlook, I'm trying to stay positive. The op did save my life! Thanks again and take care. Jo :-)

  • Hi, I totally understand how you are feeling, I was struck down with Bell's palsy a year ago now. The side of face is still paralysed & I struggle to eat & have to drink with a straw. I have also lost 50% of my hearing on the bp side & have not been able to go back to work . I am so self conscious & have lost all confidence. I have gone from a happy bubbly attractive person to someone I don't recognise. I have joined the courage to smile group on Facebook & have found it a great support knowing that your not alone. X

  • Hi. I'm amazed to hear how many people have symptoms/struggles just like me. Knocks you for six doesn't it? I look in the mirror sometimes and just want to cry, I don't recognise myself. I'm grateful for what the doctors and surgeons have done for me though, wouldn't be here otherwise. I have to learn to look at life differently now and accept my life has changed, try to make the best of it. Thank you for sharing with me. I like reading others thoughts and experiences. Helps me make sense of some of it. Take care. Jo :-)

  • Hi Jo, yes you are right we do have to learn to accept that our lives have changed & I know it's not going to happen overnight. I have a good week & think I'm getting there but then I go shopping & see my reflection in a mirror & it reminds me yet again that I've changed. But I'm trying hard to be positive as it could be a lot worse & that's all we can do. Take care Lynne :-)

  • Oh Lynne, we have so many similarities. I can relate to all you have said. Wish you lived next door

  • I had trouble replying back there was no submit button? Did you say you lived in Essex? Whereabouts as I'm only in Kent. :-)

  • Yes I'm in Essex. Basildon. Do you know it?

  • Yes I know it but not been, shame it's not nearer, the furthest I've been in Essex is Lakeside, I'm in Gillingham.

  • I used to work in lakeside. Bridal shop. I don't know Kent very well. I've only been to blue water. Although my uncle did live in Kent years ago. (Beckenham) Well anyway. Maybe one day our paths will cross. Take care it's lovely talking to you x

  • Maybe once were both stronger we could meet for a coffee at Lakeside?! :-D in the meantime keep in touch & take care x

  • That would be lovely. Will definitely stay in touch. You take care too x

  • feel for you and your one knows til it happens to them or a close friend or family member......eating out has made me self conscious...about to go in half an hour to hotel etc., not sure to cancel.... got most of what you explain above..only been a week for me.....nurses and 4 of 5 doctors were terrific...and helpful and encouraging...3 days in hospital...wanted out...worst is speech and drinking.........also eye and change of appearance.....i hope you have improved your it was and is, far more serious than mine, you having the tumor removed.....balance has become a serious i am diabetic.....and have neuropathy..extreme...condition has made it even more serious......continual falls.....

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