Daffodil

Hi Julie. How far you have come since the beginning of the year when your husband first came to the site. The exhaustion is frustrating isn't it but I am sure you are doing your best to listen to the signs and take plenty of breaks when you can.

Pacing myself at everything is my new normal but four years on it has become part of my habit to remove myself from busy or loud situations to give my brain enough time to just pause and for me to settle and I can report that life is pretty good these days.

I was a little younger than you when I had mine and like you now have a shunt , there's a few of us girls in the shunt club, Carolyn, Win, Super Mario, Louise to name a few but I think all on BTG concur that adjusting to that new state of our brain and circumstance is hard going but you will get there.

I am sure the surgery will go well for you and it's natural to be worried and fear going backwards. Also when we had the bleed we were out of it for most of the time where as this time you get to witness the worry of those around you which of course you want to protect them from. If you can try to talk to everyone and just all come together in it.

I can relate to this in that I had to have my shunt placed three months after my bleed when the hydrocephalus returned and they needed a permanent solution. I had to be back in for quite a number of weeks on that occassion and I remember going to surgery just full of fear but also I knew that in the long run it would bring me and my family some peace of mind by having had the procedure.

Which it has of course and that's what I hope will come in time for you. Yes there is a new dimension to uour recovery but you will get through it like Jess said. Take care now. Go easy and steady, baby steps and good luck. All will be well.

A good feeling that 2 year mark. A lot of water has flowed, trials have been weathered and you have certainly weathered your fair share. Well done Carolyn and keep on keeping on ! X

Hi Belle , sorry to hear Todd is having such a tough time but glad he responded to you.

I don't have a direct experience to share with you as I had none of the conditions as those you are now witnessing. I did meet a woman via a forum for young stroke survivors who was diagnosed with locked in syndrome post her SAH and she said how amazing it was when people realised she was trying to communicate. She has in fact since written a book, I'll see if I can find it and post it here, she was a lovely lady and is now back running marathons, it gave me inspiration when I was not long out of hospital and unable to walk, work or look after kids.

I'm not saying that is what is going on only medics can but it may be worth asking the professionals their thoughts and if they have any suggestions or aids, maybe they have a grid of pictures to represent words and moods such as 'yes' ' no' ‘thirsty’, ‘pain’ and ‘sad' which they have used with other patients and see if you and Todd can get him responding through that and eye movement or ask for a speech therapist ot something to help work out a communication plan.

He will get very tired but encouragement and patience will be the way.

I had a cerebral angiogram twice, once for coiling which I was knocked out for and then six months after coiling to check on the anneurism status.

Like others were I was fully awake for the second process but with a numbed groin.

The hardest thing I found was dealing with the amount of the people in the room , there was a lot of people either side of the table and then I had the scanners moving around my head like something out of a sci fi movie which meant for a busy time which was quite intense but everyone was very kind. It's not as claustrophobic as being in an MRI scanner thats for sure.

They wanted me to be awake so they could ask questions and keep talking. I felt warm sensations and 'Sparks' in my head but no pain.

I actually thought I had wet myself during the procedure until a kind registrar explained that was the blood from where they threaded into the groin, maybe too much info but it was a surprise to me.

I had to lie very still for four hours afterwards and because of travelling quite far to get there actually stayed the night too but it healed quickly with no bruising or issues, just a little tender, nothing that a couple of paracetamol couldn't manage.

It's ok and natural to be scared, but this is procedure is not being done in an emergency but in a stable situation , that helped me be calmer going in and if I had to have one again I would not hesitate.

I have no memory of my sah but this is what I have been told happened.

Was fine and working all morning, apparently told colleague I had a bad headache.

Looked very strange and when asked if I was ok said ' there is something terribly wrong in my brain, I need help' .

I then hit the deck.

Ambulance called and motorbike doctor turned up.

Reports was I was lucid and could explain I had awful pain.

I was then violently sick .

I then had a grand mal seizure.

Arriving at hospital I was apparently awake again to talk to doctors and my mum and husband when they made it to london but no recollection for me and then nothing from first week in ICU. Thankful really.

Kerry, when you worry it creates a viscous cycle which in turn effects the brain. It's natural to be concerned about the results of the MRi but I have always adopted the view that if there was anything serious they

a) wouldn't let you leave the hospital

b ) call you urgently or

c) and the most likely outcome, let you come in for your appointment and update you ....I'm sure all is ok.

We did hurt ourselves the day our brain bled so give yourself a break. If you are making mistakes then it's possible you are going a little fast for your brain to do all the multitasking that I am sure a chef has to do and against all that noise.

Maybe you need to adapt how you are recalling things, I know I had to retrain my short term memory and it's still poor when I am extra tired, worried or ill with a cold or something.

As for dementia risk, well I don't think there is any study that says we are any more likely to develop so try and just concentrate on the here and now if you can and maybe put some practical steps in to help you in the kitchen.

Greg. Patience...yep still struggle with that one!

Curiosity about the brain is an excellent division and I agree with you that so much is unknown, keep exploring, why not....maybe a new field to diversify into for you? Kris on her is a neuroscientist so hoping she picks up on this thread next time she pops in.

Confession here. I keep a book about the brain in my car, For moments when I just am sitting or maybe have escaped from a noisy setting. I am fascinated by it and understanding a little more as I feel very up close and personal with my own now. .

My neuro team concede that sitting up close to the day to day changes post SAH means we often have good insights, that's definately been my experience so your gut about infection could be right, have you thought of seeing if there is a study ongoing? So with my shunt for instance when I was having to juggle to find a setting that worked for me in the early days , scans proved I needed to adjust to a higher tolerance but I could explain and describe the physical effects of why I knew I needed it adjusting so I do think that our reality of observing our symptoms can offer some alternative insights.

Compromise is hard in the early years, knowing if you do this you have to not do that but it improves and your capacity will increase.

Greg, sorry to hear you are facing right at that wall of fatigue. I wish I could tell you that it lifts completely, for some maybe it does but for others, well it's a fluid and adjusting thing. Pacing, whilst boring has to be mastered.

When I came on BTG Looking for hope and help after having my shunt fitted I was confused by people offering to lend out spoons...what kind of place is this I thought but then Keith I think it was told me to read up on the spoon theory, it's posted on here under pinned posts and then things started to make sense. I think only then I started to adjust and realise that I can't go back to old nor can I expect things to come back the same, not after the assault our brains went through and have no doubt an assault is what it was. But that doesn't mean you should stop trying just find a new way, new habits. Old ones just don't work for me anymore.

I don't mean to sound harsh, I am still adjusting, but that getting better, that period of two years is rubbish to my mind. I still make progress and regains and I am just over the four year mark. Yes it's less remarked but I can do much more and cope with things that I just couldn't a year, two years...well you get the picture. Work wise I now work 16 hours a week , so some moderating here and that's it, I'm at my lot for now with also having two kids aged 12 and 10 it's all I can manage and it's taken a long while of very gradual build up to get there, and forget a social life, that's still work in progress.

My view though is that if you are purposeful and doing quality work then there is often a huge pay off to an employer in having a committed quality albeit less capacity worker , just my point of view. I have taken on a new and pretty demanding role that I can do in that timescale and it works for me and us as a family. The other thing is being happy with the balance, no point reaching for 100% work goals if the is nothing left in the tank for anything else. You have to set your levels for now.

I have a theory that once you get air to the brain it's never quite the same, it's designed as a closed system after all so those of us with EVD and shunts may have that extra factor to contend with, but maybe not. Same with a infection, might be another factor, might not. Who knows? Not me.

One thing I'll share which my surgeon told me is that when you have an evd, it's placed for a reason ( and boy is it complex surgery) and the reason is to provide a release for build up of pressure happening. I for instance had to have the Evd to stabilise me before they would even consider coiling the bleed and the pipe was in a long time so pressure was irregular to say the least over that time. The ventricles are blocked at that moment and just can't cope. ( mine sadly never recovered thus my shunt)

Anyhow That blood filled cerebral fluid ( sorry folks ) which couldn't drain off around our brains the usual way had to come off quick but before that happens the pressure built up is not great for the nerves in the brain. ( can you tell I read up about this and my resulting hydrocephalus a lot...) so this will also be having an effect as well as the bleed or at least so I was told. In effect two types of damage.

So have hope Greg, ego to achieve is a powerful thing to drive us forward but can often trip us up as we seek to regain fragments of our old selves. The more intense the cognitive and analytic demand is in the work you do the more breaks and pause you need. Even now I can typically only manage a max 5 hour day on my pc and calls but I have to adjust my rest pattern if I have to accommodate my doing a full day of meeting and analysis work , thankfully that's rare these days. Like me my work has adjusted. I hope yours will too, sounds like they are good.

Momo. I kind of agree with you I think that illness and trauma is very personal and always unique to the circumstance and how you react and experience it especially when it is a brain injury. Complex is a good word in recovery Momo and applying a label of 'PTG' to how some people react is definately a little hokey ( got to use it again!)

I may like to hope that most people over time can find something positive comes from their experience but know just as well that the outcome for many may mean that's not always possible. I still have days when I rail and rally against my defecits but know they pale to nothing compared to how they were initially and Those that other people contend with permanently.

And the 5* word?....just my Brain error of one star too many!! Well I am on BTG for a reason

Susan, that is just lovely to hear and I imagine that is the effect that I was curious about. I know that my experiences from my Sah and its legacy have changed me forever, some in ways I don't like too much but also in other ways which I do. I'm so glad you are doing well and thanks for making this your first post!

Carolyn, it is a interesting point of view they are exploring that the very same trauma that can bring on PTSD can also trigger alternative or co-incidal reaction of personal growth or emotional change that is positive for some people; they feel freed from previous concerns or stronger from their experiences. I think they mean that with time and a shift in outlook with fresh perspective ( and less pain) that people can see they have grown positively from the experience. Maybe it's just spin but I truly hope the growth is not referring to an increase of the 'less nice' trauma effects

So after my diagnosis of PTSD and subsequent counselling to help me deal and manage its effects on me that I have come to realise that I am now a much stronger and resilient person than i perhaps ever knew I was pre SAh . I sweat the small stuff less these days, rarely worry for long about much and have come with time and distance to appreciate the changes the SAH and its effect have given me. I speculated about it a bit in the Lost and Found thread on here.

I saw a great quote the other day that said somethjng like 'be kind but take no *****' and that just about sums me up these days and I just like me better. Maybe it's just im just so happy to be here ,be purposeful and get some more days under my belt.

Anyhow There is a growing body of evidence about post traumatic growth and I just wondered what members of this group thought about that or whether they think it's just hokey.

An article on a recent study if it's of interest http://time.com/3967885/how-trauma-can-change-you-for-the-better/

Woah Gemma, what a roller coaster few months you have been having. I can't imagine what that news meant to you but I hope that you continue to get great care and support from the medical team as they explore a bit more about what that means , where next in recovery terms and how they can help with the spinal issues that you have been left with.

I am wishing you the very best you know I am . Keep on keeping on!!

Daff x

Hi Susan, I had major surgery some four months after my SAH when I had to have my shunt put in. I suppose the fact that I was having brain surgery anyway made me less concerned about bleeds, they scared me with all the possible side effects but I can't tell you I wasn't scared, I was but I was more scared of never feeling any better and I had little choice to be honest, I had to elect to have it.

So it sounds like you have a sensible and fab neurosurgeon and as everyone has said, make sure you are well informed and make sure you keep that water topped up after the general as I think getting over that takes time too.

Gemma, I hope you are doing ok too.

Good luck, keep us posted both of you.

Hey claudette. Sorry to hear of your worry. Keep positive and I'm sure it will be fine.

Like some others here I have a widened neck on my coiled anneurism and another which is small so just monitored. I have regular follow ups as they check for compacting of coils and explained this can sometimes occur because of pressure of the passing blood flow pressing and shifting the coils settling down in their location. Fortunately mine have not compacted but the neck remains because if they had coiled it fully then it would risk blocking another artery as it on an an artery intersection, I have been told I would need stenting before any additional recoiling.

A useful video I watched which visually shows how it works and made me see how those tiny coils could squeeze down. https://m.youtube.com/watch?v=15J5s9fwSEE

This time four years ago I was sitting down after a wonderful but busy day with two of my dearest friends and enjoying a chat and catch up over a couple of cheeky drinks and coffee. One was my job share partner in the role I loved and the other an ex colleague going back to my early days at work. I had another busy day ahead so was staying up in London but it's my very last memory from my 'old brain' and so I cherish it as the following morning at my work event, surrounded by hundreds from my company I was felled by my SAH.

I have zero memories other than those I have been told since. I was a lucky lucky girl , people recognised it was a brain event and I got help for what was a big SAh , grand mal seizure and hydrocephalus and i was just round the corner from the National in London . My work wife stayed with me throughout for the ambulance ride to uclh and then the national and remained until husband and mum could get to me but I just have the odd flash back but no true recall and I really am pleased as the events I experienced later on were already enough to trigger PTSD later in my recovery.

It was four days before I came around properly and even then it was to total bewilderment and having ground hog day moments as to why things were so odd, and what on earth was that tube in my head for, and who are you again?

Those following days are pretty clear and unpleasant to be honest but I don't dwell on those memories that often now, they played with my fears for far too long. It was a fairly significant stay in hospital , a return of three weeks for yet more surgery to have my shunt placed , no driving for 15+ months and two very sad scared young daughters ( not to mention traumatised hubbie with all my blue lights trips I had before shunt got Put in). Together We weathered a pretty big life hurricane.

That year was really hard , full of pain , trauma, set backs and fear but throughout it I was loved, supported and never lost hope that things could get better. And they did. Slowly and surely I have reached my new life goal of ' steady for the most'! BTG played a big part in that process so I really do thank you all. Karen and founders for creating it, Paul and Lyn whose story left me humbled , Win whose singing reached my darkest moments and made me realise you just have to carry on and find the smiles in each day , SM showing me travel with shunt is possible, that's just a few but many of you have helped me get this far so i thank each of you for giving time to me and others and for all for the reassurances, the shared experience, the encouragement , fun comments and banter and the hope for better you gave to me.

My colleagues still carry the memory trauma of that day as do I and will for ever but thankfully like my scars it has faded for them as I, we all tracked my recovery , noted my progress and in time over those four years since I have been able to regain and return in part to some of what I did previously.

Tomorrow, I'll hug my girls and chap, I will work from home differently and for less hours than my old style but I will enjoy and manage it. I will smile and sing a little I expect and most of all I will be thankful for the day arriving and for that day four years ago when I Survived. I'm different today but then who isn't, I take each day as it comes some better than others and enjoy as many moments as I can.

Have a happy International Women's Day everyone, I plan to celebrate this and all the other SAH woman tomorrow!

Hi Nat

As you can see from above how you feel is entirely normal but that said it is really horrid and unpleasant living with this level of fear and so I think all of us are united in saying don't suffer it alone. Go to you GP, ask for counselling and in the meantime do things that help you relax and let the panic and worry subside when that feeling comes upon you.

Survival is a funny thing. Our adrenalin kicks in and that helps us deal with the unpleasantness of our trauma in the early days but that wears off and then we are left with the legacy of knowing and feeling the trauma of the experiences, it reaches into your soul and has changed us all, all that takes some getting used to. Time helps but also so does talking about your worry.

I had counselling after SAH! Once in the first year and then again when my fears intensified for no reason, I was then diagnosed with PTSD so was able to learn some techniques that helped and still help me get past that fear and feeling when it grips.

Main thing Nat is when you are at you most worried is to just sit, watch and wait. like Win says if you can hum a tune, or look at a nice picture or suck a mint, basically concentrate on something small and then just notice whether your pain has shifted or moved. The reality is if we have another bleed that is not within our control anyway but trying to stay calm will help the blood pressure which is a good thing and get help. As Karen says it's incredibly rare as far as I know but the fear of it is incredibly common. It is a viscous circle, the more you stress, the more you get headaches, the more you worry, so the more you stress....try to break the cycle.

Worry is normal but in the end it will change nothing . Sorry if that sounds harsh, I really do get it but I have had to let my worries go( and they can still grip me four years on ) Yes my shunt could need replacing or block, yes I could re bleed but I could also fall down the stairs, get knocked down by bus, worry won't keep me safe, you get the picture.
Life is for living lovely lady. Yes In an adjusted and different way but we have to choose to accommodate our new fears and knowledge of our fragility and then we can smile more broadly and enjoy our days.

Go talk to someone x

Thanks Greg. I have to go into London next month and will be staying overnight so may well take the opportunity to visit.

Peter. Wow what a time. I made friends with a fellow SAHer who like your wife had her SAH abroad and then had to make the trip back home following surgery and I can only imagine how hard that was for all of you.

I am glad your wife is doing well and you are all adjusting to this new state of affairs. Well done on taking il the mantle of housework, it truly does help I promise you but make sure you pay heed to yourself as well, it will have rocked your boat as well all of this. The exercise Is good, keep it up but personally I suspect the effects of the shunt has more bearing on stamina levels as it seems that people who don't have this intervention fare better at getting back their exercise levels up. Give it time though, gently does it. Same for driving. Give it time, and when she gets back go short distances at first, common sense stuff really.

Good to hear she has a local plan in action for follow up and that all is steady. I hope in time you do get to complete your final few states in the U.S. but yes afraid insurance will be hiked to say the least. I'm paying a small fortune for my shunt, coiling and family to Go to Greece this year for a week but it's well worth it.

Hi claudette. I echo what everyone has said already. It will improve, you will notice changes and intensity of the headaches hopefully adjusting but also know that it's your brains way of telling you it's still doing a lot of hidden healing in there. And don't be a martyr to them, take the tablets when you need them, that's one thing I learnt from the Pain Management team, get in front of the pain to let the healing happen

The exercise is a really good thing ( I'm jealous of your Neuro team gym sessions, any tips? ) but maybe add a few more 'quiet' times in as well for your brain to just sit a while esoecially afterwards, also I switched to decaf coffee, so I can still enjoy the taste just without the 'whoosh' !

The angio and going back to work will all play on your mind so try to be kind to yourself and know that it's normal to get worried about these milestones when they approach, they will make you understandably nervous or on edge, thinking of all the 'what ifs' and that's ok, but then just like you have with all the other things you will get past it and it will be history. Things are different now to plan maybe but that's ok.

Take care now

I have many many hats now. The High heels had to go with balance these days so I have swapped them for hats and I can't go in the wind without my head covered , even so this weekend the wind laid me low. Louise, win I was thinking of you as well in these storms. They always pass though ! Thankfully

Glad you're home, glad they are keeping an eye on you and a belated Happy Birthday. Sorry to hear the MRi had an effect. I had a number of 'reactions ' not to dye but to other medication which caused that feeling and it took a while for it to pass so I hope that it is leaving you and that they can concentrate on the business of your checking out.

Go easy now!

PS. I delayed my 40 th celebration to my 41St because of my SAH and surgeries I was too ill to do anything at all but the big 41 was just as pleasing to mark I am pleased to say but now I think I'm a year younger than I actually am!

SM you and Win were the main reason I joined BTG, two women living with their shunts , getting on with the doing smiling ( and singing) and offering me hope .

I have always enjoyed the matter of factness and honesty in how you replied to people, the practical encouragement and ideas you willingly share and most of all the inspiration to get on and travel and live the life we have been given. I know I wouldn't have dared get on a plane had I not read of your travels and thought, I'm going to try and do that too. I Haven't made it as far afield since as you yet but I hope when I make the 12 year mark I can make a decent comparison.

Thanks SM. Looking forward to the next virtual postcard!

Hey Gemma, I hope that the marking of one year out was special for you and your family. It will have marked how far you have come from those early days and been a opportunity to thank those who have supported you so closely for their unwavering love and help. On mine I had a meal to mark it with all those who had done that for me and I treasure that memory.

We share a few traits in our SAH story and like you I still wasn't driving a year on but I hope that this will soon also return to you and bring you some additionally freedom, less reliance and boost your confidence.

You're right about the family and the worry they carry for you, you can't ease that for them but try to get them to talk about it. Subs, any advice as the partner view?

You're doing well, "keep on keeping on " and a big "woohoo " for yourself one year on !

Daff x

Hey Chris, so I'm going to welcome you to the group, glad you are doing ok, the flutters and sensations are odd and scary but try to wait and watch them , they pass, drink plenty of water and be gentle with what you ask of your brain in the coming months.

I also expect all that fitness effort you did before the bleed will have been a blessing in disguise as it maybe meant that you were healthier and in better shape to deal with then what happened. Karen who set up the site often mentions she has never come across reoccurrence but always check out your fears and concerns with the professionals if you have questions.

They can't give us gurantees that we may wish for but if you are sensible and build things up gradually , listening to your body, then you will make progress and find your new level of training.

You may find because you had the EVD tube placed it means recovery from this surgery and scar healing in addition to the effects of the bleed and it may also leave you a little different to your previous version, time will reveal Any changes to you and you can always ask to be assessed by a neurophyscologist if you have concerns but also pleased for you that you didn't require a shunt, I mean I'm very fond of mine now but I wouldn't much recommend them

Take care and no roller coasters ...!

Oh Sammy, you poor lady, how scary that will have been. Let yourself have a good cry if you can. Sending big hugs your way for having had such an awful experience.

Like Tina I have had more than my fair share of LPs and the only thing I can say is tell them you want the best possible person doing it, no risk of messing about now after all you have been through, they need to get the best doctor ( an anaesthetist in my experience can be a good person for the job they do so many blocks for things) anyway then it will be done and over before you know it and you can hopefully Get some answers . Do Drink plenty of water after.

Your daughter is rightly upset by all the goings on in her life but keep talking to her, do you have any services in France that offer support to children in challenging circumstances to talk about their feelings?, if not then maybe look at some online ones you could do together.

My youngest who is now10 and was 6.5 when I fell ill and still worries when I go off without them or we do something out of routine but I have helped her to see that life will and must go on regardless, so even when it feels hard, even when we get scared, even if it hurts we can still continue one step at a time. Keep reassuring her and she will regain confidence, mine still clamber into bed with me if they feel insecure and I'm fine with that, if that's what they need so be it. I used to climb in with them some nights