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So glad to have found this site...................


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............. it is the first place I have found that gives me actual experience of what has happened to me. My SAH was about a month ago and the anuerysm was clipped and then coils inserted. I am now home but have found the whole thing bewildering and a bit surreal. I sat in the garden the other day and thought that I don't believe this has happened to me - it must have been someone else.

I do, however, remember that dreadful headache and accompanying neck pain. All I could do was crawl into bed. My poor worried husband rang the duty doctor who spoke to me and diagnosed migraine. However, by the next day, I had no idea what was going on and my next recollection is waking up a week later in hospital. I had a drain in my head, a saline drip and what appeared to be a pair of giraffe horns up my nose. I gather these were delivering oxygen as I had insisted on dispensing with the mask!

My major worry now is how much I should/should not do. There seems to be no follow up in place at all. I have talked to a GP and my local physio who has been treating me for joint issues for a number of years now and both say listen to my body and follow what that tells me. I have worked out that bending and moving about too much induces a headache and I am still taking painkillers every day.

I would like to go back to work for a couple of hours a day (I am a manager of a local charity which helps with financial administration for disabled people who manage their own care via direct payments). Can anyone tell me whether it is safe to do this?

Would be grateful for any advice!

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Hi there

Warm welcome to the site.

Listening to your body is very sound advice it that, that tells you how far you can push yourself....

Try not to push yourself to much you are very early in your recovery, be patient know its hard we've all been there....

take care

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Hello Victoria,

Welcome to BTG, you've done well to get on this site so soon in your recovery.

If you go into 'inspiration' on the home page there is 'a letter from your brain', well worth the read.

As Louise says, take things very easy and slowly.

You will gain a lot of advice from this site.

Rest lots and drink lots of water.

I wish you well with your recovery.

SarahLou Xx

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Hi Victoria

Welcome to BTG. You are doing really well to be on the computer so soon after your SAH, well done you! I was still sleeping for most of the day when I was a month post SAH. It took me 3 weeks just to be able to get the strength and co-ordination to be able to stand in the shower and wash my hair!

I was told by my surgeon on the day of discharge to wait 12 weeks before getting back into my usual routine. I took from that, that he meant I should be back at work then and was getting a bit stressed at my slow pace of recovery. Some people do make it back to work after 3months but for most of us it takes a lot longer. I went back after 10 months, on a phased return, lasted 11 weeks (I'd only managed to work up to 12 hours per week) and was then signed back off again for 4 months. I returned to work last July, straight back into my 35 hours and haven't looked back since! I've only had 4 days sick but have also cut my hours back to 18 3/4.

Your GP is absolutely right, you have to listen to your body. It will let you know when you have done too much and the dreaded fatigue will set in and/or the headaches. As Louise said, try not to push things to much and don't put too much pressure on yourself. Remember you have had a brain injury and our brains determine the timescale for each of our recoveries and it will refuse to be rushed!

Have you visited the Brain & Spine Foundation website? There is an information sheet on there and it gives advice on returning to normal activities etc. There are neurospecialist nurses too that can give advice on the phone, or did your surgeon give you the name of the specialist nurse in the hospital you were treated?

Wishing you all the best in your recovery.

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Hi Victoria! Welcome to Behind The Gray!!! You've definitely come to the right place - you will find tons of informtion on recovery, personal experiences, all kind of great resources here :)

All the folks here know what you're going through, 'cause we've been there too. Ask any questions, read as much as you're able and come here often. This place has been my lifeline and has helped me in my recovery as no other could have!!!

What's happened is a hard thing to grasp and accept. Learning to listen to your body is so important. Whe you are tired, sleep! The brain is in a healing process and it does take a good deal of time. While each of us recover at different rates, it seems we all share many after effects and have to learn to deal with them. You are so early, at this point, in your recovery and it is hard to know what's ok and what's not. Sometimes it is trial and error as we attempt to do things, get back on track with life. My dr.s told me no driving, work, lifting, or strenuous activities for at least a month. This made me think that at the month's end, I would be back to my normal self and back in the swing of things! Not exactly the way it happened for me!!!

So, take your time and be good to yourself.

Looking forward to hearing more from you,

Carolyn

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Hi Victoria,

I was signed off work for three months after being released from hospital and I remember feeling devastated at that length of time but your brain really does need time to start up again (your body too as brain surgery is a major operation). I was driving past a beautiful park about 8 months after my SAH and, like you sat in your garden, the thought hit me out of nowhere that 'I've had a brain hemorrhage'. It takes a while to sink in and it is such a shock that it happened. You are doing well to realise the enormity after only a month and I am sure that is a positive thing.

I also found there was a serious lack of aftercare, I had none for nearly 2 years, it also took me that long to hear about this site. There is so much information available for you here. It will also help you to know what sort of help you may or may not need to ask for as time goes on.

Best wishes for your recovery.

Michelle

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Hello Victoria and a warm welcome to you.

I think many of us can relate to what a shock it is to have suffered a sah and the many questions of what you can and can't, should or shouldn't do. You are very early on in recovery and as others have suggested, you perhaps ought to try and rest as much as possible now as many of us have learnt the hard way and tried to do to much too soon.

I believe it's a case of doing what you feel comfortable with but bearing in mind that your brain will object if overstretched. I personally took 5 months off work. I work in a bank so finance and figures were all there and even after 5 months my brain couldn't handle it like it once had. I am fine with it now although I still get "Brain fog" if tired.

If you do decide to try working, I would certainly stick to a couple of hours to start with - you may be fine, but again be prepared that it might not be as easy as you had hoped. It's so hard to judge as everyone's recovery is so different.

I thought everyone who had coils put in had a follow up appointment approximately 3 months later, so I would get your gp to check that out. As for other aftercare, it is in short supply, although there is currently a link to a survey on here, the results of which will hopefully lead to an improved aftercare service in the future.

Wish you all the best in your recovery,

Sarah

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Hi Victoria.

Welcome to BTG, you're in the right place.

Everyone on this site has a story to tell, and all the accumulated wisdom will smooth your path to recovery.

It took me five years to realize that I needed the help of other people who understood my problems, so, well done for finding us so soon after your SAH.

The follow up care (or lack of it) is well documented on this site, and I would suggest completing Karen's King's College survey whilst all your experiences

are fresh in your mind.

It's only when we all speak as one that things will improve for SAH sufferers.

Don't rush back to work out of duty. People should understand the enormity of your event.

They won't, of course, because you seem to be recovered, apart from a little fatigue.

The main problem, I faced,(apart from depression, which is another story) was the worry of re-occurrence if I put my body under any physical stress.

This led to me becoming frail and weak and it was

many years before I began to rebuild my strength.

Six years on, and I'm building dry- stone walls and digging patios without a thought of any bad effects.

What doesn't go away, is the tiredness.

After a day in the garden, I sleep like a hibernating bear.

You won't find much practical advice from clinicians, but you will find it here, on BTG.

Your at the beginning of a long road to recovery, and you may never be exactly the same as before, but life, post SAH can be just as good as before,

(if, a little different). The confusion and uncertainty will subside and the new "you " will emerge.

If it's any help to you, the advice that I have received on this site has helped me to turn my own self- destructive (alcohol) life around , completely.

My family have always pushed me towards recovery, but it took the massive wave of unconditional good wishes that I received from complete strangers.

on this site,

to make me really change.

You're right when you say it's surreal, it certainly is, and no-one should have to go through all of this, but here we are, all of us together, all recovering

to the best of our best abilities.

None of our symptoms are identical and none of us recover in the same way, but we all understand the common conditions that affect us all.

You are in the right place, Victoria, so keep on posting and before you know it, your advice will be helping others to navigate this bizarre world that we

are all part of.

All the best,

Bill B. x

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Hi Victoria

As others have said, you're doing really well to get to this stage after only a month. A month after my op, I was still lying semi-comatose and unresponsive in hospital!

Don't be rushing back to work unless you have to. After the initial buzz of being back with your friends, you may start to find difficulty in doing everything you used to do and that can be frustrating at this stage. Take some time for your body and brain to recover from the trauma they've been through. My enforced break from work enabled me, for the first time in my life, to appreciate and enjoy the art of relaxation!

I'd be surprised if you don't receive some follow-up aftercare - as it's only been a month or so, perhaps your appointment letter will come later. I'd thought that follow-up checks were standard to ensure that the aneurysm repair was secure. I had 9 coils inserted to seal my aneurysm and, following discharge from hospital, I had repeat MRI scans at approx 6, 12 and 18 months, each followed by an appointment with the neuro consultant to confirm that all seemed OK. Last consultation was January 2009, but I'm due a final scan in summer 2012, five years after the event, before being "signed off". I somehow assumed that this sort of aftercare would be standard procedure throughout the country ... but maybe not !!

In the meantime, take it easy and make the most of the sunshine!

Ian x

Edited by Ian53
spelling mistake
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Hi there,

As the others said Victoria, just listen to body..ie...if tired rest but also !!!! ......get people to take you out for lunch and dinner

Then go shopping, ....to buy some chocs..then pass them to me lol

Seriously try and be happy if poss, smiling keeps me bright, also I sing a lot( My poor family) I am tone deaf lol

If you have a good day let your family know.....They have been scared for you, as mine were for me....but make the most

of it ...as they (My Family) are getting back to normal the better I get..lol, I just luv to be spoilt but SAH is a drastic step for being spoilt

Keep smiling Victoria and be happy.

Love

WinB143 xx

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Hi Victoria, welcome to BTG!

Don't rush back to work. I did that and only prolonged my recovery. You have had a very serious, life threatening event. You survived and now you need to take it easy and care for yourself. Take time to heal and rest. The world will still be there when you are ready to return.

Sandi K.

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