My brain injury experience: In August 2009 I was... - Headway

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My brain injury experience

supertwizzle profile image
6 Replies

In August 2009 I was diagnosed with a brain tumour and subsequently underwent four seperate operations. At the moment it is looking as if that may be the last of it but I have been left with right-side Bells Palsy and many other problems from lack of memory to anxiety attacks. I am slowly getting my life back but don't think I will ever be back to the way I was and I am still coming to terms with that. But I have come a long way and each day is a step forward :)

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supertwizzle
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dragonflyqueen profile image
dragonflyqueen

Hi Supertwizzle,

Mine was a brain tumour too. Hope you are doing ok.

supertwizzle profile image
supertwizzle in reply to dragonflyqueen

Hi dragonflyqueen

I'm not doing too bad really. How are things going for you?

dragonflyqueen profile image
dragonflyqueen in reply to supertwizzle

Sorry short & sweet yesterday fatigue kicking in. Like you my operation was Sept 2009. for a right sided meningioma. I am blessed to say he got all but 3% of mine away in the one operation. I'm smiling now as remember him dancing a little jig as he came on to ward in the morning. I was told it would take at least 2 op s and they would have to sleep induce me into a coma for 2 to 3 days.

Mine have left me with focal seizures and absences.The seizures, i havnt had one for just over a year now but i am a bit of a dolly day dreamer so that as made it impossible for me to drive, I do still get tired very easy. Like you i have memory problems and i am this year or should i say the end of it accepting that NO life will never be the same again. It happened for what ever reason and we cant change it so we have to make the most of it.

My husband takes me along to the headway meetings. I must say i did not like it the first few times i went . I would cry when i got home and go on about not fitting in. But my husband who is very outgoing would talk me into giving it another try , its only once a month. Now i love it , we have just been away to London for a weekend with a couple we have become good friends with. We all at the group have a couple of outings each year and i look forward too it .You sound like you have a positive attitude , its always good to look back and remember just how far you have come and give yourself a pat on the back for that cause only you can do it.

Nice to hear from u , look forward to hearing from u again xx

supertwizzle profile image
supertwizzle in reply to dragonflyqueen

Mine was also a right-sided meningioma and in total I have had four operations, one to put in a shunt and then one to unblock it and two on the actual tumour itself. Just went for an MRI scan recently but haven't had the results yet. Last scan showed no growth on the remaining tumour so I'm hoping it stays that way.

I too had seizures after the last op but have not had one for a few months now. I was also left with right-side Bells palsy which I still have and have lost most of the hearing and sight on that side too.

I live on the Isle of Skye and although Headway are hoping to start a group here there is not one at present. My nearest group is a three hour bus ride away and I would have to stay overnight so at present it is not really practical for me to attend. So this blog site is really useful for me as I am starting to come across other people with similar experiences to me so I don't feel so alone.

My old life is certainly well and truly over but I have greived for it and moved on and I am now building a new life with a new man and a new family. We just celebrated our second Christmas together and it was wonderful.

Life is still challenging especially in light of all the benefit changes and such that are happening at the moment but I am still here and grateful for the chance to face those challenges, I guess that is how you know you are alive.

We are survivours and that is definitely something to be proud of. People often tell me how brave I am which I find strange as I don't really feel I had a choice but maybe its time I started accepting that. Really good to hear from you and hope we can talk again xxx

dragonflyqueen profile image
dragonflyqueen in reply to supertwizzle

Yes , i have found that a strange expression, brave. i would rather it not happened but not much we can do about it.

Glad to hear you have moved on and made a new life for yourself, congratulations. I'm back at hospital in new year for my MRI results. not expecting any changes though.I lost my hearing and all my left peripheral vision before my op and they wasn't sure if it would return but it did. I am very light sensitive though and where dark glasses most of the time in door and out especially watching tv & now on computer, triggers off migraine if i don't. I am chaperoned all the time cause of absences ,poor memory and cause of my balance i have fallen quite a lot. It do,s get on my nerves some times . Never going anywhere on my own but mostly i make a joke of it saying im a bit like royalty with my own body guard

I have two birthdays now, the day i was born and the day i survived 1.09 .09. My eldest son started that tradition and it seems to be quite common amongst survivors, Do you do this ?.

This benefit thing is a worry , one we could all do without, Main worry is to look at majority of us you wouldn't think anything was wrong. I don't go out on bad days, Only socialise when i feel up too it, This is the best form of communication for me, dont know about you. Telephone calls and visits are so draining. Im not much of a friend these days.

bye for now xx

need a nap.

Matt2584 profile image
Matt2584

Hello Supertwizzle and Dragonflyqueen

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