Daffodil

Hi Neil
I haven't welcomed you to the group yet so sending a big hello and glad to hear things are levelling for you a bit.

Making adjustments post SAH is something that comes to all of us to varying degrees, understanding that life did change for us in the moment of our bleed and we cannot rewind and have things just as they were. So keep the positive outlook, keep looking forward and in time you will find new things that excite and stimulate your senses, maybe not as extreme actions and adventures as before but something new, just different.

You mention "Short term memory, loud noises, music and background noise are a problem for me and I struggle to concentrate for long. " again this is a common challenge , I couldn't go anywhere loud and busy post SAH for quite a while and still know this will use my brain energy very quickly.

Ear plugs and sunglasses helped with that but it really knocked my confidence having been so used to taking all kinds of things in my stride but it will improve, build it up slow and steady, it's not a 'push through' kind of event, you have to regain that mental stamina capacity by retraining your brain to things you want to do with consideration and kindness for your injury.

Working abroad sounds tricky right now but I would hope you could find ways to use your knowledge and experience differently until you feel ready to maybe try it out again
Anyhow, keep going chap. Onwards.

The Access to Work factsheet has been updated for advice on starting or staying at work if you have a disability or long term physical or mental health condition. The scheme can provide practical and financial support to help you overcome employment related barriers. http://ow.ly/WALgJ

Hey Andy. I am so sorry you and your family are going through this and that your wife had such an ordeal but I hope that slowly things will begin to improve for her and her eyesight, it may well be a slow pace but I have learnt that steady and slow is actually a condition to enjoy and value.

The sickness can be due to so many things to be honest, the effects of the hydrocephalus alone brings really awful headache and sickness and of course there is the effects of the bleed plus all the medication, the shunt and coiling surgery, the list is pretty long.

Keep watch on your wife as they will on ward and if pain gets worse then don't hesitate to shout but these Neuro folk are used to managing the pain and it takes a while to find a balance to keep on top of it after all that interference With Our control panel.

You're right that the cake may have been the saving of her and I hope in time you will sit all together again and enjoy a nice slice of cake. Go easy, go steady and remember shout or ask if you are worried.

Daff

I think I have shared that I started a blog , pogoestifty when I was back in hospital again post my SAH waiting to hear whether I needed a shunt which did. I found it great therapy ever since and it allowed me to track my progress and share with family and friends how I was doing. I blog less these days but have just posted for New Year and I thought I would share some of my list on that post here on BTG which as a forum helped me so much to make my adjustment and peace with what happened.

"So as we head to the start of another year I thought I would share my lost and found list of living and adjusting to life post my SAH bleed and the subsequent surgeries for that and my shunt James which has left my brain changed forever.

• I lost brain a lot of brain cells 8/3/2012 due to the severity of bleed and through the surgeries and hydrocephalus but I have learnt , regained and found new ways of learning since then and I now treasure and treat my brain a lot more kindly and tread a little more gently through life.
• I have lost touch with some friends since that time but have gained an understanding of what true friendship looks and feels like. I am blessed to have the people that I do and I don't ever take their friendship for granted. I just hope I can one day help them the way they have helped me .
• I have lost a lot of worry and fear, it's strange how an event that forces you to know your own mortality can do that but I have found I am much more at ease and accepting of situations and really don't worry about much.
• I lost a little of my ambition. Well I think it's safe to say I have realigned it to the possibility of achieving whatever my current state allows but in doing that I have found I enjoy just doing what I do, for now anyway.
• I have lost respect for people that just moan and witch about everything and everyone without doing something to change but have found courage to walk away and distance myself from that. You don't ever need that stress in your life and it appears my brain hates the effect of it therefore I do not allow it in mine.
• I have lost a lot of social fun times and this has been hard to adjust to as you see I liked a bit of scene, a party, a loud concert but I have found I adore a 121 conversation just as much these days , it requires less energy and booze than dancing on a table and I don't care too much about the subject on offer as long as it's one that interests, intrigues or inspires and is with good company.
• I have lost living for tomorrow or in the past. I have found I can only do what I do and live in today and with a bit of luck and a fair wind I will have another one tomorrow and if it doesn't well I can say,'well today was a good sort of day'
• I have lost the ability to sleep completely flat due to the effect of my shunt at night so now sleep Barbara Cartland style propped up on cushions but without the pink nighties and feather boas but have found that you really can get used to and adjust to anything if you keep a positive outlook. I mean every time I forget and tip my head to far or back I get to hear my gravitational valve work and move, how cool is that, I get to hear the internal workings of the rubies at work with the hamsters.
• I have lost count of the pills, procedures, scans and doctors I have seen but I have found that progress is best measured by looking at your lowest point and then where you are today, nothing else really matters.
• I have found it always good to try help someone else no matter what your struggle is and so I have the lost the inhibition to offer help if I think it's needed.
• I have lost the feeling that I have to go it alone for something to matter or be worth something and learnt it's actually better to #lean in , you can take the corners better and it makes it easier to hug other people if you do. "

What did you find and lose?

Happy. Healthy 2016 to you all.

Hi Ashley. I imagine that both you and your wife are feeling a little shell shocked after that meeting. Neuro surgeons are a different breed entirely I am pretty sure, I think they probably have to be to do what they do but I have yet to meet one that considers any emotional impact of what they say. They deal in fact and the art of surgical possibilities but that's just my view and I digress from the point.

If there was any immediate cause for concern I really feel they would be doing something and testing further, I think the reality is they probably don't know what it is, and are speculating aloud, ( not helpful ) and I have personaly been on the receiving end of a 'special meeting of the neuro consultants' to decide if I have another anneurism or not. Thankfully I wasn't included in that chat but even being told afterwards was pretty hard going and For now for me they have agreed, not unanimously , that It may be so I get checked annually and that first wait for my first follow up MRI scan was an anxious one but as time has gone by I have made peace with it.

Maybe they will use this as a baseline scan and then determine if there is any change. I agree with the others though, call and ask if you can chat it through.

Sorry your wife is feeling it so much, I can recommend the Brain and Spine Foundation who have a helpline staffed by neuro nurses if she feels up to talking, they may be able to offer you some more medical advice and talk things through, you can call them also, my hubby did a few times when he was worried about me in the early days and wanted an indepependant view from the team treating mehttp://www.brainandspine.org.uk

Take care both of you, try to take each day as it comes, don't dwell if you can on the 'what ifs' and try and get some answers soon so you can feel a bit more confident about the future.

Mistina. Don't feel bad for feeling worried, for being scared, for asking for help. These are the most natural things in the world post SAH and just extend yourself the kindness of knowing it's ok, you don't just bounce back to where you were.

Jess has hopefully reassured you that babies and therefore the act of making them is ok and possible in your future but I imagine the fear of sex ,because this is when your SAH occurred , may be pretty large in your mind. Just a thought , and I don't wish to offend anyone here, but you could maybe try starting things slowly and gently being intimate with your partner and taking it your pace. I say this because then you can put your mind at ease maybe just on your own terms, build your confidence that it's all going to be ok. And it will be.

Feeling fearful isn't uncommon but left unchecked can start to rule you so please go and talk to someone and get some counselling, it will really help you. You had a traumatic event and brain surgery and so these aren't small things that can easily be taken in stride, they knock us of balance and then we need to find a new centre of gravity. And you will.

Time will heal, scars will fade, fear will ease. Be kind whilst that process unfolds for you.

So there is now an online tracker which also shows the crazy length of time it's taking them to evaluate consultants responses and process re-instatement of licenses.....aargh I feel for you all going through this. I found the whole thing very annoying as nothing I did made it happen faster , an ironic similarity to recovering from SAH....

So.glad you have got your keys back Greg. Go easy, build up times behind the wheel and Gemma and Clare I hope you get a note from the DVLA in your Christmas stockings

Gilly. Hey. Sorry you had so little help, that's awful but yes go back and ask them to help you understand what has happened. Search the site here a bit, lots of links to some useful videos or information also Headway and the Brain and Spine foundation have some good booklets you can download.

Panic attacks , I have had the odd one since and did find myself anxious after all the events linked with my SAH and subsequent surgeries . My best advice to you when it happens is sit down. Feet firmly on floor, try to breathe slower and louder, into a paper bag if that helps, count them in and out and just observe and watch the sensations. If they pass away or move to somewhere else In my body then i figure it's nothing to worry about.

If however a pain gets worse or your symptoms are getting worse then it's time to do something and seek help. When it's passed drink a large glass of water ( nothing else ) ,maybe suck a mint and then get on slowly.

Be kind to yourself my lovely. Early days for you and cleaning is a hard effort so take it easy as much as is possible for you.

Ps. Morphine. Hmm. Yep didn't find much fun in the hallucination dreams but at the time I did thank the relief it brough me to be honest.

Gemma. All the shunt girls are here. With Win leading I'm sure we would be a winning five piece!! As Carolyn, Mario , Win and louise say, take heart, you are doing well. Keep faith it will continue to improve.

Like you I had a grade 4 then the hydro came back yet again so in went the shunt. And balance was a tricky one for quite a while for me. I built very slowly and very gradually in anything, it's the only thing that has helped me stamina wise and if I did anything I had to rest afterwards . Now not so much resting but on bad days yes I still have to go easy. On bad days I still walk with a stick because I know my balance is off but hey I can walk when I couldn't so I will be proud and happy with my walking aid.

When I was not driving as I know you aren't I also got the bus and remember just falling off it one day, my legs just would not do what I wanted, and there were many times of just landing flat on my face. I do think the effect of the hydrocephalus and resulting damage is very different to the problems created by the bleed but that's just my personal speculation.

I did get my shunt adjusted quite a few times in the first year. I felt , I knew it was not right for me, I was getting too dizzy, felt like I was slowing down, i was going backwards but only you and your team can make that call. It's good you are being checked out. I know that team and trust them.

The one thing I would say is that you are achieving an awful lot after such a bleed and your ops and adjusting to a shunt. You are working two half days, doing OT, and your things and yes it may be that you brain is struggling at this point so ramp it down and then bring it back up again gradually. More breaks in the day of nothing, it's so frustrating I know but when I recall what I was doing twelve months out I can tell you there was an awful lot of one step forwards, two back at that point. It seemed every time I regained something, something else was skewiff.

Sarah , heres to the next seven years and hoping they are easier on the system than the ones you and your family have endured in the last seven. I really hope this marks a turn of fortune for you all and life gets, well gets a little steadier and more of an even keel.

Take care x

Hey Dave. The sleep and strange sensations can be scary. I woke with a start for no reason after my discharge and whilst I was still on lots of pain killers at that point I would have awful pains, then get scared, then be unable to get back to sleep. Racing thoughts, heart, pain. It was hard. And yes if I was so bad I woke my partner up then he of course would be anxious and worried. He also reports many nights when he used to watch me sleep or check on my naps just to check I was still breathing.

I think it's good your partner is talking to someone, she will have been very scared by what happened and felt helpless so help to process that will be good for you both.

Time will heal. You will both regain confidence. You will begin to be able wait out the odd sensations, see familiar ones and notice those that are new with less fear. You missus in time will begin to be annoyed by your shuffles and snores rather than panicking but it will be baby steps. Be kind to each other. Hug lots!

At night getting back to sleep is harder if you focus on it or worry so Try not to beat yourself up. Sleep and nap during day when you can or feel the need for as long as you do and then at night if you wake just gentle thoughts, relax your body bit by bit and even if you are just lying resting then that's ok. Also get some pillow mist, yes I know it's not that manly but it helps to calm the thoughts!

Sue. I confess I read your post a few times and had a little smile and a tear in my eye . I was 39 when I had mine and I'd be lying if what hadn't crossed my mind was would I see my girls who were aged 6 and 8 at that point , grow up. That feeling of being a prisoner of my limits some days is familiar but so very lovely to hear that 20 years on you have found the hidden rewards and new accomplishments to be had. Big hurrah and thanks for coming and joining us.

Hi Sharon, I'm sorry to hear you are having such difficult times but I can't say I am all that surprised that you would be struggling to manage all those hours so soon. It is so very admirable that you are trying to do this but reality and physical stamina is reminding you that it was just 9 months since you damaged your brain and asking you to tread a little slower.

I suspect that those in medical professions whom witness daily the amazing feats a human body can withstand and survive can become quite indifferent to the lasting effects of some of these conditions and thus become the worst employer. It's the ' oh you had a SAH, so glad you are feeling better' view without truly considering and thinking about what a bleed actually does and how hard you must find working with those demands and bright lights.

So take the time to rest up, speak to your Union rep and ask for some adjustments to be made. Yes they do have to consider those requests and respond appropriately but I also say to anyone who finds themselves in situations like ours is to think about what you want, what does good, look like for you? Think about practically if that can work , and if so how. The employer has to consider it but it's up to us to really be honest about our reality and what is practical and hopefully if they value you as a employee and a colleague they will find a way to make it work. Together. Collaborating and talking.

We have some doctors and nurses who are on the forum as fellow SAHers so hopefully a couple of them may be able to share some practices which have worked for them.

Louise, it's a bittersweet thing isn't it the anniversary? I hope it wasn't too sad a day.

I agree with the others that your generosity in sharing advice on BTG over the years but also the hope and inspiration that your 16 year anniversary brings others is so appreciated and so positive.

Yes life changed for us SAHers but without fail life also marched on regardless of our trauma bringing the usual heartaches,loss, strife, laughs and highs; and the' hills and dales of life ' is how someone described it to me, but somehow it's those hills and dales that make up the beauty and interest and joys of being here and yes I include living with our lovely life saving shunts as part of the interest!

Take care lovely lady.

Kieran. Well that's fantastic that you feel able to regain some of your routine so quickly and take back up a pace that you feel comfortable but Win and the neuro docs are right that often the majority have fatigue and issues but hey, maybe you are the lucky fish that got away.

That said you have had a head trauma, a big one if there was a fracture so maybe heed their caution a little more and go slow, alien though that may be. The chemicals and euphoria post bleed can sometimes mask the effects of brain injury so just go easy if you can. Rest a little more than you would and drink plenty of water.

It Sounds like your bleed was the result of an accident so please just extend your body and head the kindness of giving it a healthy amount of time to heal a bit more gently. If you are still at Uni then your youth is telling you it's ok to get the foot back on the pedal and to go fast, pick up where you left off and do everything but if this was a broken leg you would get back playing sport until you had allowed it to heal properly. Give your invisible and injured brain the same courtesy. It will thank you in years to come if you invest in it now, don't overstretch it.

Mum lecture over! Glad you are doing ok.

Hey Frank. This all Sounds all very familiar , no stress is easier said than done isn't it!! but well done on being kind to yourself and adjusting your work pattern as I do think it's key to be realistic. Pushing through is not an option I have found to my cost. I was talking to someone about this today, our bleeds don't define us or our future but we do have to make big adjustments in our lives and bring in coping mechanisms. I don't think I will ever accept my new limits but like you im closer to understanding the effects and being less scared.

Well done and good to have you back.

Di, ( poppy) I think you are fantastic for sharing that and I am really sorry you have had such a hard time since having the stent placed and recent procedures. It's great that the change of diet is helping you to ease some of the symptoms and I am really hoping that as time moves out from the procedure that your brain will settle down. Sending you some get better vibes.

Sarah. That's so sweet of you to say, I don't feel very inspirational most days so that's a lovely compliment coming from you! I'm so sorry about the news you had this week, I can only imagine how you feel knowing that you have got to have more coiling done again, not surprised that you forgot to ask questions.

Can you take someone with you and make an appointment to ask questions , I find that always having someone with me for things like that spreads the emotional load a bit, I don't feel quite so alone I guess. And you're not alone either, I know it's you who has to face this development but we will be here to encourage and reassure as best we can. Sending cyber hugs.

Life may have changed drastically for all of us in many ways but regardless these Annie's do not and will not define us, only we can do that. Each day, baby steps ladies. Xx

Davie, if you haven't had invasive brain surgery , a EVD placed or a seizure then technically your GP can clear you to drive post SAH ....can you tell i spent far too much time on this. I'll try and find the other thread with details but there is a document that explains it....

Edited to add. In this thread is the link to document , may find it useful to explain http://web.behindthegray.net/index.php?/topic/2166-dvladriving-advice-needed/?hl=dvla

Hi David. Emotional lability is the official term for it and it's very common post stroke. I would see a baby, puppy, a nice book even and cry...yes seriously, but it got better as Sarah said quite quickly and although I'm quicker to cry I think that's becuase I know bottling it up makes my head hurt.

Take care. Glad it's of help here, someone will always be able share an experience and offer an encouraging word or two.

Hey CodeWarrior , no I haven't had acupuncture since my SAH but I have had some gentle massages which has been good.

I think my shunt is fine , thanks for checking, I've just got back from my annual MRI today which I have as I have a neck on my coiled anneurism so they keep an eye on me and I expect they have a check on the ventricles and shunt whilst I'm there , anyway either way a yearly brain check is reassuring if a noisy event for me.

Anyway I guess I also wanted to say please stop giving yourself a hard time, none of this is easy what with the bleed, the surgery and how they place the shunt , it all plays havoc with emotions and our normal rational thought. Be kind to yourself. That goes for everyone.

One positive , (I think;) ) is that my journey with all this means I have had lots of experience of pressure change which means I do know my signs of both low and high pressure so I would hope that I know if my shunt was over draining or under draining, I am reknowned by my neuros to be super sensitive to any pressure changes. Ive helped them understand the feelings a bit more to be honest and how it physically manifests, it's why I had to have my shunt setting changed quite a lot early in.

No guarantees in this life but plenty of opportunity. so keep smiling even if we are a little bit broken

Hi Paul. I agree with SUper Mario the shunt community Can be a scary story. Like you after I had the shunt placed I went in search of groups that might help and to be honest they didn't, it just fuelled a worry that this bit of brain kit I now had for life might fail anytime and that's a scary thought. So I stepped out of those and educated myself !

I know my signs and now I just ask here or my Neuro team for advice. I did find a local network but again it was mainly directed at people born with spina bifida who often have hydrocephalus and these conditions exagerate each other so just be cautious in taking everything you read and thinking that is how it will play out for you. You haven't had problems so far so no reason to think you will.

Here's what I have learnt in my short time living with a shunt, I hope it may help you a little to begin to accept and adapt to life that's different.

Shunts aren't perfect but the technology and advances in surgery and equipment mean that you should have many years together; worrying about it failing won't change a thing, you can't control what you can't control. You are worried it might be you, well it might not.

The odds are that if something is wrong with the shunt you will know about it and you will have time to seek help. But again we don't have gurantees in life, our mortality is fragile and that's something you maybe need a little help to accept. I have accepted that based on my age it is a possibility I may have to have a revision in my lifetime but I'll take that over the alternative any day.

If you eat well, look after yourself and take things steady there is NO reason at all why you shouldn't have a great life. Yes it's different to what you had planned , yes it's ok to be angry and sad but at some point you need to look up and forward and the shunt is actually the reason you can look forward, it's your everyday lifesaver, I am actually more than a little greatful for mine, it's the reason I get to kiss my daughters good night each night.

Whether a shunt is working or not can be determined by scans which is why you must always go and get checked if you have worries. Sudden dizziness, high temps, vomiting....go get it checked. The scans, be it MRI or CAT shows up the the ventricle size and if this changes it can be a sign that the system is not working or blocked.

My shunt was placed some months after my bleed if You recall and it was scans that determined that my ventricles still weren't draining properly. It is the shrinking and changing of pressure in these that causes the real pain with hydro and I went from high to low pressure may times so I am speaking from experience here. The risk if left unchecked is the collapse of ventricles which is why you must be kind to yourself and also know what's right and wrong for you.

I had lots of scans initially post placement as they thought my shunt might not be working properly and when this happens they also do an X-ray series of the abdomen to check for pipe blockages. Please trust me when I say you would know something was wrong and they can check.

You describe the 'looming shadow of shunt failure ', have a try changing your thinking to the ' the gift that my shunt is there'. It is invisibly working away each and every day for you. That's amazing really when you think about it. Think about people who live with inoperable cancer, those who await a transplant, they sieze the opportunity in each day , health permitting , and that's what your shunt is giving you the chance to do also, don't waste it in bitterness Paul.

Try to stop looking back and scaring yourself with accounts that may not be relevant to your circumstances. We didn't choose this Paul, none of us did, but by building trust each day that your shunt is working for you and will be ok will help you move on. Just hope for the best and you will deal with it If that ever isn't the case. Thats all you can do here. It's all any of us can do.

Both I didn't have to take a test and had the Evd and the shunt and like you Gemma have some cognitive lasting effects. It took a lot of chasing and my arranging a letter from my consultant before I got my license back but I think that's more down to the failings in the administrative procedure at DVLA than anything else....keep faith. Keep chasing .

Some wise words in replies and welcome. I'm sorry it took so long to get treated but you are here and we celebrate that with you.

Just to add that the greatest gift you can give yourself right now is kindness. Imagine if this was your best friend this happened to, now treat yourself as that friend. Don't berate yourself for what you can't do, be gentle in pace with your recovery, be honest with yourself and others what is possible and celebrate all the small steps and always notice what around you makes you smile.

The worry and fear you feel is natural right now so don't bottle it up it just makes our bruised noodles feel worse but the feelings will pass and you can always try Wins famous advice which has worked for many of us. Sing a happy song.

Michelle, Colleen, Gemma, Clare, louise and Kris thanks for your kind and thoughtful words. Yes it has been easier as the week has gone on but it's been a week of a bad head. I have my annual MRI next week so no doubt that is casting a shadow of uncertainty and is unsettling me but Bottling things up isn't an option any more for this head of mine So i have learnt I have to put it out there so thanks for being on the other side and listening and understanding,

Kris in answer to your question. Yes. Every time I have tried to regain , whether it was walking in the early days or getting in a swimming pool for first time again (threading a needle took me months to learn and coordinate to do) there is that fear and inner self judgment of what if I can't find a way through or learn a new way to do it.

Then there is the frustration at the realisation that some things still are out of reach but after the sweet success of doing something again for the first time again , regaining it, there is a little inner comparison knowing that you do it differently now and the energy it takes to do it is so different and greater. Externally people don't know right, they can't tell ? After all whatever it is you do still gets done, only we know the cost of having had to learn and find a new way to get there.

I do ask for help more these days, I learnt that lesson very early on when everything was out of reach without help but now people see me do so much more of the 'normal' that asking for help becomes harder for me but maybe that's my ego talking.

Luke , Thanks for the comment on the thread but sorry to hear your mum is not great today but just to say if your mum can't sleep lying down then suggest that she try's to rest slightly propped up on pillows , I'd pretend I was a queen or something!! and turn off any distractions like TV but maybe just listen to some very quiet music if she can bear that but if she is sick again or her level of alertness changes in any way then please do go get checked out.

you mentioned her sodium levels were hard to manage in hospital and if she drinks a lot of water then whilst good it can also imbalance the system which is already knocked off kilter. It's a difficult balance, we can't give medical advice obviously but if you are worried about her then please seek help or phone her team at hospital for advice.

Oh and I had a lot of build up drinks when I came out as I had lost so much weight in my stay and it seemed to help me fill the gaps between meals, so try and not to let her get hungry.