support/friendship

[wannagetbetter]

Hello, i'm new to this site. I had brain surgery in May 2012 to remove a tumour from right frontal lobe. I'm still recovering and in the process of learning to cope. I'm 40, no kids, married to my husband for 5 yrs. Is there anyone out there who has gone through the same type of surgery and diagnosis and what are you doing to cope and what are the kind of experiences you've had. Hope to hear from anyone soon.

[bikerlifestyle]

You will find that whatever the type of brain injury a lot of the symptoms are the same although how they affect each person is different

The coping is the same for us all, we all have to find what works for us

The best thing is try and break down the issues into smaller parts and then share them here and there is plenty of support

Sadly its a matter of chasing treatment and therapy rather than it being handed to us but out of all the therapy i have had CBT (cognitive behavioural therapy) worked the best

[wannagetbetter in reply to bikerlifestyle]

thanks, i realise i may be having problems even breaking things down into smaller parts. i am already looking into CBT. I am chasing treatment and trying to find support and just doing that as well tires me out.

[cat3]

Hi m'dear and welcome. Yes, the various brain injuries and operations seem remarkably similar in terms of after effects. Mine was a subarachnoid haemorrhage in Dec2011. My left-over symptoms are headaches, short-term memory loss, balance problems & poor concentration. Also, as time passes, I'm finding my patience doesn't stretch as far as it used to and I'm easily irritated. Oh.... and the fatigue.

I keep pretty busy (on good days) gardening, practical jobs etc and, on bad days, I try to keep my brain active by reading, crosswords, using the internet...........

It seems that after you're discharged you have a check-up after three months with the consultant then, after that it's two or three mri's, then you're on your own (that's my experience anyway). But I've been luckier than many people who have been more severely affected and who have undergone treatment/therapy for much longer periods.

I'd be interested to hear about how you've been affected by the surgery, and any difficulties you're experiencing as a result.

Hope to hear from you soon. Regards, Cat x

[wannagetbetter in reply to cat3]

Thanks Cat, I have to say that I am thankful that I can walk, talk....look normal to everyone else. I do lose patience and get irritated and frustrated, thats why I am frantically trying to get help but I need the help and support of someone besides my husband to help me do things like filling out forms. I noticed I'm unable to express myself in saying what I want.everyone is telling me mys symptoms are normal....i get that. only discovered on Friday that being disorganised is also a symptom cause of the part of brain affected. Yes I realise if i don't ask for help or state what i'm experiencing nothing is offered. Basically I've had no help, so I'm trying to find out and gather what info I can and hopefully to be an encouragement to someone.

I do ramble on sometimes so I hope I am making sense. I do need prompting a lot

[cat3 in reply to wannagetbetter]

Sorry, forgot to say......I agree with biker on the CBT. It could be a big help in introducing some order and discipline into your way of thinking and also with any confidence issues.

You've made the most important step in seeking recovery by admitting that you can't do it alone. And you have a realistic attitude to finding that help, by firstly gathering all the information you can, before making any decisions about the route you need to take.

Stay in touch and don't be afraid of 'rambling on'..........you didn't. xx

[Bobvant]

Hello there......sensible questions to ask, wannagetbetter.....I wish I'd done the same. I had an op to remove a meningioma tumour way, way back in 1997.

Sadly, I wasn't given any debriefing about the possible after-effects. So, I spent years feeling that "something" about me was different, but not being able to work out what.......how could I, when what I'd use to work out what had gone on was what had been affected?

Have you had any advice on possible personality changes?

With best wishes,

Bob

[wannagetbetter in reply to Bobvant]

That must have been pretty difficult not having any sort of info. I've had no advice on personality changes, if I did I'm unable to remember. I think my personality stated to change way before tumour was discovered. I know I've changed now and I also realise i'm functioning differently and I can't seem to be how I used to be. I thought I could just pickup and carry on as normal. It is not happening and I am admitting now that I need help.

[Bobvant in reply to wannagetbetter]

As you no doubt know, owt which affects your frontals can affect your personality. One of the big problems (for you and others) is that you might well look the same as before.....sound the same as before....but you know you're not the person you were.

Might I ask how you think you've changed? How you think you're functioning differently?

And.....has anybody suggested any books which might help you to better understand what's happened to you?

Bob

[wannagetbetter in reply to Bobvant]

I used the Headway helpline this week and they will be sending me some literature. can you suggest any book I can read. I'm not sure if I knew of personality changes with frontal lobes. I feel restless and edgy cause I want to start getting some sense of normality. I'm trying to be strong and I'm tired of people telling me to stop being so hard on myself. I know I have to learn some new way of coping and behaving but what I don't know.

[Bobvant in reply to wannagetbetter]

'Strewth.....damn this website! I wrote a response-pressed "Reply" - was told "You have to be logged in" -still was, but went to Log In - and my response had gone.

Ho-hum.

It's dangerous for non-experts to offer advice, but there are two things I'm confident about doing.

First, I agree 100% with anyone who tells you to "..stop being so hard..." on yourself. Come on, now, you've just had a huge life-changing experience. It's going to take a long time to work out what's hit you and what it's done to you. Trying to do/expect too much too soon won't help at all. My partner, Sue, has just reminded me about how tired I was as my brain rewired itself......and that I still tire quite easily...so build that into your recovery plan. (Your brain has to go through another adolescent-style rebuild....but that doesn't excuse petulant "You're so unfair!" behaviour. And no, YOU'RE NOT GOING OUT DRESSED LIKE THAT, MADAM!)

Second, I can tell you what happened to me. This doesn't mean it applies to you.

I had a fist-sized meningioma scooped/sliced out of my noggin in 1997 (follow-up op in 2002). It had squashed my frontal lobes into the front of my skull. So, I ended up with DYSEXECUTIVE/FRONTAL LOBE SYNDROME.

Now, The Clever Bonces still argue about this - what it is - can we really say it's a separate Thingy? - but look it up.

You might find things there which you think you recognise. There are lots of possible symptoms, so don't go all hypochondriac, telling yourself you've got "A,B,C" 'cos you've read about them.

("Hmm....bubonic plague...

that makes sense." )

Here's an idea. Why don't you and your husband read and make notes independently, and then compare what you think you've found out?

( Hint. A bottle or two of red can be of assistance here ).

Have you had a post-op analysis from a neuro-psychologist? If not, go ask your GP to refer you for one. N-ps aren't that common, and your GP might not know much about what's available.

So, I suggest you search online for what your NHS Authority has under "N-p Rehabilitation," and what other services there are locally and wider-afield.

That will mean you can work with and help your GP, rather than being/feeling helpless.

Also, I recommend you keep an accurate record of what medics say/do. Then, just in case you need to, er, "assert" yourself about what they said/did ( as in "complain" )....you'll be able to put a detailed case.

There are at least three factors involved in your recovery.

1/ Your husband. Tick!

2/ You. If you can be patient, and reasonable about what you can do alone, then you can get a Tick! as well.

3/ Medics. I'm going to write at length on this site about my experiences of neuropsych rehab in November. The most important "input" was also the most frustratingly negative one - an absolute disgrace. A real shocker. How's that for a teaser-taster, eh?

Bob

PS buy yourself a HEADWAY lapel badge. You might already have become aware of how little the effects of brain injury are understood by Jo/e Public. The badge can start interesting discussions and raise awareness. Wear it with pride!

[Kirk5w7 in reply to Bobvant]

Hi Bobvant, you talk such sense, stop hiding your light, I'm only 18 months in to my recovery, my biggest frustration is I feel like I've deteriorated, my balance has got worse and my head feels like its all pressured most of the time, only normalish if I'm lying down, GPs etc make you feel like you are being ungrateful if you tell them how it's going, truth is they don't know do they. Need a new sick note so will try again. Thanks again for your support on this site Janet xxxx

[Bobvant in reply to Kirk5w7]

Dear Janet,

What I read of other folks' problems on this and other sites makes me feel humble in their presence. I will go and find a cap...there it is......and I will doff it out of respect for you.

Hang on - I'm going to see if this gets posted - if it does, I'll witter on after it.

Bob

[Bobvant in reply to Bobvant]

Woo-hoo! 'sme again. I wish I knew enough to give you practical help...but I lost contact years ago with some "friends" down Manchester's Moss Side who could have, er, "Had a word" with Medics on your behalf. "Nice having both knees, ain't it, doc?"

Have you tried, with help of family and friends, to find out what/who/wherecan help you?: First, to work out what's up? Second to come up with practical ideas to sort stuff out?

One person who helped me was Dave W from THE CARERS' ASSOCIATION. Get googling, Janet. Find your nearest group. Get in touch asap. Pronto. Toute de suite. NOW.

Oh, I wish I knew enough to say more.

Bob

[Kirk5w7 in reply to Bobvant]

Thanks for the reply, I tendto dip in and out, we took No2 son to the pub it was his 18th today, now I haveto go finish his UCAS formwith him , will check backtomorrow Janet xxx

[Bobvant in reply to Kirk5w7]

Happy Birthday, Janet's lad! It's an exciting time to be alive.....the prospect of a whole new part of life opening up in front of you. I can heartily recommend Aberystwyth as a place to live as well as study.

[wannagetbetter in reply to Bobvant]

Thank you.... I try to not be hard on myself...I don't know why I feel so guilty sometimes. I finally got see a clinical neuropsych last week. waiting on report. I am learning.. I am learning and making baby steps

[Bobvant in reply to wannagetbetter]

Great news on neuropsych!

And bear in mind that you feel guilty because you're a decent person.

Good luck with the report and any follow-up on it.

[Hidden]

Hello and Welcome!

My husband contracted encephalitis over twenty years ago and that resulted in an ABI. No matter what has caused the damage to the brain; many of the after effects are very similar e.g headaches, memory, fatigue etc. Couldn't agree more with all the other posts.

[Hidden]

P.S. You won't be short of support and friendship here, though we are apt to go off track but we agreed (I think) that it isn't always a bad thing just 'different medicine' x

[wannagetbetter in reply to Hidden]

Thanks...it is all very frightening to me. I am generally a positive person but I seem to have lost motivation and I'm realising the enormity of my situation, hence reaching out on this site. I'm trying to find things to help me. It is a long painful process because I need some other type of support...just don't know what as yet...s trying different things.

[iforget in reply to wannagetbetter]

I sustained my TBI in a fall but I can identify with the needing some kind of support but not being sure what I needed... yet knowing what I had was not it... and being unable to explain this... It is all a huge learning curve and the journey is littered with platitudes... Personally I found little comfort in being "lucky to have survived", or in knowing I am "not the only one" ... It may be hard to believe right now but you will find your way through (in your own time and in ways that are right for you) . There is no quick fix and no "one size fits all" solution but there are loads of us just a little way along the path all willing to hold out a hand of support in whatever way we can.

[Bobvant in reply to iforget]

And.....has anybody else got sick to the back teeth of trying to describe what you think's happened to you, only to be told "OH, AYE - I'M JUST LIKE THAT!"

Bob

[bikerlifestyle in reply to Bobvant]

Too many times I have heard that so as soon as I hear that from a person, I just immediately shut off from them as there is no point going any further then I find that I don't open up to that person at all after that

[iforget in reply to Bobvant]

Just about every time I have to explain that I have zero short term memory the response is "oh I know exactly what you mean...I forget stuff all the time too..."

Its on my list of "things that make me go Grrrr!!!! "

I think these little frustrations are among the many things we have in common no matter how, when or why we sustained our brain injury.

[wannagetbetter in reply to Bobvant]

Yep I d and I get annoyed..i mean I know u can forget things if you are tired or stressed...but I get that all the time...so yes I don't really say anything to them anymore...they say they understand but they don't. hence I'm on this support.

[iforget in reply to wannagetbetter]

The thing is that others cannot possibly know/fully understand...I always thought I was pretty clued in/up about this kind of stuff...and when I sustained my injury my world tipped upside down and I realised I knew nothing... Its been an interesting ride so far...

[wannagetbetter]

Thanking everyone for their replies so far

[SAMBS]

Hi Wanagettbetter, good sound advice and help here from the others tonight, I relate to and agree with it - I'm not as good as them at anaylsing anything any more - I just want 'to be normal' again is what I feel [my TBI was March 2013) - but what is normal - I guess we are all, over the years and months slowly or otherwise finding our own new 'normal' .... as you say our friends think we are OK cos we walk, talk and don't look 'different' - those who don't understand wouldn't know what sort of support to give you I suppose, and as you say its difficult to explain what you do want.

[wannagetbetter]

Hi everyone,

I haven't been on here in months and started to in the last couple days for some motivation and encouragement. There has been some progress( practicing to focus on the positive) and a lot of setbacks in the past few months that has left me so exhausted. Been getting lots of assessments to get rehab\therapy started. Have seen an Occupational Therapist twice and been discharged from a speech and language therapist. On my own when I can I do little crosswords and memory games. I have so many delays and everytime things begin to start to go in the right direction it all goes haywire. My partner is exhausted as we still do it all on our own and its crunch time. Also I've had 2 friends in the past week who thought I would be back out to work already. I started to feel ashamed then I thought to myself I was thinking like that 6 month ago and realise not just yet hence getting all the info gathering. My goal is to be in some sort of part time work before the end of year at least cause life goes on. In May it will be 2yrs since surgery

I've had another upheaval in my life which might mean me starting the whole process over again. new GP, new area,new help. Right now it seems a huge challenge amongst other things. I do not know how I'm doing all this stuff on my own. It is very stressful which is not good for my health. It is hard. I still have no outlet or routine which is what I'm working towards and now major upheaval. I am yet to find the positive in this new upheaval and I'm afraid and worried. the few friends I have are all caught up with their lives and stuff and ones I shared deep stuff with I have stop saying anything to them about what I'm going through and I just talk about the positive.

There I've got some stuff of my chest.More will come out eventually. I hope I don't come across as complaining, cause I am not and I know I have a lot to be thankful for.

How are you all doing?