Daffodil

" it is nice to learn something about your uniqueness" Kris that has to be one of the nicest ways I have heard someone describe viewing medical jargon on notes.

Ponigirl. The hole you had was possibly an extra ventricular drain I think. EVD . I had one also. The reason for the procedure was explained to me some months afterwards by my neuro team as this: When the bleed leaks over the brain in a SAH it can prevent or block the absorption of the cerebral spinal fluid by the ventricles, this combination build up of fluid and pressure is incredibly dangerous ( as if the bleed isn't already !!) Basically its a double whammy brain crisis and the pressure ( hydrocephalus) requires immediate attention because in itself causes damage through pressure all over the delicate brain surface. I had to have the EVD placed before they would even attempt coiling. Allegedly the EVD procedure is one of trickiest brain surgeons perform because of where they have to place the tubing through but they all sound pretty risky to me. Anyway the basic facts are blood where it shouldn't be and then building pressure of fluid on the brain which is literally a time bomb. The EVD allows the csf pressure to reduce and be managed with the hope the ventricles can resume working once the blood disperses , which it does for many. In some cases though the ventricles are found too be badly damaged to work and the hydrocephalus remains a permanent condition as legacy from the SAH and this brings with it admission to the VP shunt club for some of us with a permanent valve and drain to manage Fluid pressure. I found I needed to know exactly why and how this tubing etc in my head works and why it was neccesary and that helps me so just sharing what I learnt,.

Sarah Lou. I hope making the changes you outline work and bring improvement for you. I do 16 hours a week over four days , never more than five hours in one sitting and that's with little breaks too. This pattern is my max and absolute limit for now with regard to work so I really feel for you, it's such a struggle to find a acceptable limit to what energy and brain power you can expend and then still have any spoons left for family and just living and then of course it always changes .....sending hugs

They do say medically trained people can be the last people to seek treatment! I'm glad you are seeing some steady recovery. You are so right about the insight into ageing. I often sit with my dad who is in his 70's now, and he moans about being creaky and can't move as he did. Then I moan a little about being tired and not being able to move as I did and then we look at each other and just laugh because thankfully we are both here and just slowed down enough to enjoy and appreciate the moments and time we have together which is beautiful really. Limits are hard to accept whatever your age or whatever the reason change was wrought.

Dawn it's so fabulous you managed to keep communicating with your employers openly throughout and also that they have shown empathy and consideration for you but shown sound business sense in making adjustments to work patterns that allows you to work well within your capacity. Bravo all round. A great example and one that should be more common place. You and I have talked about this at length and I'm really glad you have found something that improves your overall quality of life but helps keep the bills paid. I am lucky that I had this phased , gradual build up approach adopted from the start when I went back after 15 months off!! it made a huge difference building up gradually with tasks and interaction and now I even manage a trip to London once a month but it takes its toll when I do but I value it. Interestingly like you and Karen 5 hours seems to be my absolute max for now if I want to have anything Left over for family and homelife but even then I have to make hard choices about what I choose to do as stamina is still nowhere near where it was. That said I aim at steady these days and most days it is in reach. I like that. Onwards.

Good luck Berger and I hope you find your way back to art soon enough, being creative I think really helps the brain in healing and maybe you will gain new inspirations, but take it easy early on in recovery and be kind to yourself.

Margaret , so nice of you to reply so early in your recovey to help someone else. I promise that your frustration at these new limits does ease as acceptance of any change grows. We are supermen, super women for living through what we have experienced so now it's time to reflect and be kind to our amazing brains and give it some real space to heal. Try and Keep patience when you can, it will help you in the long run. Yes it is very boring, annoying, frustrating and definitely not part of the plan to realise you have limits that you didn't previously but thats how it is for now. My daughters were 6 and 8 when I had my SAH and like many of us I had a demanding and busy job and home life but the mummy who came home from hospital was very different version to the one I was before the bleed but they (and my work ) understand this now. I live life at a very different pace these days and it has taken a while to be anywhere near ok with that and sometimes I still wrestle with it but then that's usually my ego talking. Frankly I'm just happy to be here to hug and squeeze my Girls when they let me as they are now growing up so fast and mummy cuddles aren't always allowed, well not publicly anyway! No one is healthy and fine all the time and it's ok to take the foot off the pedal especially with what has happened and yes financial pressure of course plays a part but look for any workable alternatives that give you some balance right now, it's amazing what you can cope and adjust with. Good luck

Jill glad you are feeling better and you must be in good shape to do the pony driving with you granddaughter but please like the other members say just go get yourself checked over we all have fuzzy and balance moments but a collapse like you describe should be given a little more attention. I had to have a few heart check ups after increased dizzy spells whilst they got my bp medication settled and like you I lost my license for over 13 months post SAH which worried me but there was never any mention about driving and if I had experienced what you describe I'd be back getting it checked out to be honest as there can be some very simple explanations like medication levels need changing or even anxiety brought on from fear.

Rob, I had an EVD placed and that 'squelching' sensation I recall. Lots going on there as they run the tube under the skin from the burr hole to its exit hole to avoid infection so it is probably still early healing days for you. The burr hole itself is pretty sensitive in the early days, I remember Super Mario, who is one of the members , telling me it lessens over time and she was right , so sharing that the funny feelings of creeping and tingling and pinching will pass but it is important that if you notice any change in sensation or increase in discomfort or pressure then always get it checked especially as you had a drain placed. Personally I use the burr hole as an indication of how I am doing as it acts like a little like a baby's fontanelle, if it is more depressed than usual then I probably need to up my h2o liquid intake.

Hi rob. Welcome to the site. Glad you are doing ok five months on

Hi Paul , glad Lynn is home and hopefully you will find some advice in here helpful to you both in the coming months. Similar to your wife and Karen . I had 31 days in bed , significant weight loss and I was slight anyway which meant muscle wastage and Lower back pain and pins and needles in my legs all of which were horrid and worrying to me and woke me most nights and kept me awake. Walking was hard work and it took a lot of time to build up my stamina And strength. Pain relief was really important I took paracetamol and ibuprofen on a schedule advised by hospital and gp, alternating and then codeine based as needed if extreme but some days nothing worked. Things that helped; not lying in one place for too long, lying with my head raised when sleeping ,like Karen suggest a v pillow, gentle heat on the lower back, getting up very slowly in three stages from lying and doing some gentle leg , ankle stretches each morning and night. Also lots of water and not letting myself get hungry, I even had those supplements to help me put the weight back on. I also used to do a very gentle self massage on my shoulders before sleeping, no pressure just to soothe before I slept. It helped me deal with the worry of the pain. It does pass but suggest she talks to gp about pain management and maybe physio when she is a bit further in.

Mandy, well done on the weight loss, the fitness goals you achieved and good luck with gradually building that fitness back up after your bleed. Take it steady now , be kind to yourself , and stay off those ciggies!

Hi Elizabeth. Fear and confidence. Two big things in the life of any patient, family and partner after a brain injury regardless of its cause and have no doubt that this is what your husband is recovering from after his bleed. His previous fitness will help him as will his positve attitude but as he is already finding out and you are witnessing , you can't kid the nerve control centre that everything is fine and just push through like you used to, there just isn't the processing power right now. It takes a lot of guts to say to people around you ' wait , I can't do that right now exactly how I used to ' or ' I'll just do this and then no more' . That is in fact easier the more severe the bleed and effects because it's just so blooming obvious. However it is hard to admit to them and more importantly yourself that you can't do something and there is a fear that if you don't do things you will might never do it again. There is also the fear from our partners when we do push too much ( which we all do) because you are witness to us showing ourselves at our weakest but understand in doing that your husband is able to share with you himself at his most raw and vulnerable, with you he doesn't have to pretend all is well. I know that must be hard to witness ( my hubbie agrees , I told him about this thread) but in time you will get back more of him and keep encouraging him to make decisions today that give good balance for all the family long term. Less haste more speed. Try to encourage your type'A' consultant to write down what his own prescription would be if someone else who he loved Was to have a bleed, what would he be advocating they do. And fine go and help build the house if he must but why not tell the other fellas that he gets to be foreman this time and he'll even make the coffees but no heavy lifting and if they ask why tell them that he'd have words with their consultants if he saw them doing heavy work so soon after a brain bleed which I am sure he would. He needs not to be frightened of what people think. They will be pleased he is here, not judging him on if he is coping but seeing him Act as a role model because he is taking care of himself for his family to promote the best possible healing he can. That's a physician's job. So that's my view, no you are not his mum,you are his friend, his cheerleader, his brow mopper, and comforter and in time the other more fun and sexy stuff will be there too, it's just a different phase for you guys. I am realising now I am in this for the long haul of getting better with the help of my chap, and so what if some people don't get what I am like these days, how can they, they don't live With My brain so all I can do Is explain to them what helps me and why I do things like I do now and leave it to them to decide how to behave.

Sub zero. I am glad we are up to date in your story and it's fabulous to hear the journey and progress your remarkable wife has made in this time but make no mistake that our progress is often enabled by our best cheer leaders and it sounds like she has a first class one in you. You asked "Perhaps you can tell me-what is going through your minds when you react contrary to your previous selves-do you know before you react but can`t control it-do you feel guilty afterwards-or do you just react and that it that? Do you dwell on what you have said that is out of character" so I wanted to respond to that. My SAH was nearly three years ago now and in the six months post I was in and out of hospital and acute care for in excess of 10 weeks. When I finally stayed home it was obvious to all that whilst I may have been noticeably thinner and shaven headed in parts I was also different in character in some ways. My inhibition in hospital had been very odd at times with outbursts and frank talking but that control pretty did all come back but now when I am tired especially I am very quick to say things that I probably would have used to keep to myself. However I am better at apologising if it is inappropriate, ( actually I find most of the time it isn't and people appreciate the frankness once they get over the shock of it, they know I am truthful and never say anything to deliberately wound). So I tend to be more open in my observations, like your driving, that made me laugh. I trust hubby implicitly but react differently in the car than I did with him. He just laughs now, and then we both do. The other thing is I don't dwell on it, once I have said it Ieave it behind, it's almost like I need to say something out loud that could be causing me worry or distress and then once I have I just get on , that is a gift from my SAH, I don't dwell on anything. Our partners ,and family members who watch and witness our recovery ,you can observe the changes, the differences in our reactions and I speak personally when I say having understanding why that is and showing some empathy that we are doing the best we can every day even if you aren't that keen on it is a very good thing. You say you haven't been tolerant but I suspect you have and will continue to be. Best regards to you and your wife.

Liz, couple of things help me keep calm and drift off. Ear plugs , same as Kris, I take a few Bach rescue remedy drops on my tongue just before, it might just be placebo effect but I will happily take that!! I then just concentrate on my breathing and breath slowly into my stomach and just concentrate on that to be honest and It helps me stay in a good place. Also travel with lots of time and give yourself some extra time when you get there to sit outside before you go in, maybe have a mint, so no rushing about that way you can go in a nice calm relaxed state. Lastly try not to worry to think too much about the scan itself and remember you have had these scans before In a much more emergent situation so try and smile that this time it is just routine and we are more checked and watched over than ever before. Very good luck for tomorrow .

Julian, fab news about transatlantic flight, brave with the two under five let alone so soon after bleed, well done. I think your contributions and posts have been very relevant and I am glad you are doing so well , it sounds very promising. Feel free to drop into BTG from time to time as your continuing recovery experience will only give encouragement to others.

Hi subzero, I'm so glad that Win sent you this way as I am sure people will learn from your experiences, having a partner point of view is so helpful but my goodness you have been through it both of you. I am looking forward to hearing the rest of your story and I hope your wife is doing well in her recovery .

Poni girl, welcome to the two year club. Hope that haircut is special . My first haircut post sah was very emotional , he came to my house specially as I couldn't drive and surveyed the portions of undercut of hair and wondered what on earth to do with this shoulder length hair with two shaved bits; I looked like something from the muppet show!, anyhow we both cried as I showed him where my shark bite scar for the shunt was and where he need to avoid the EVD scar and burr hole and then he cut my hair and for the first time in a long time I felt a little bit normal so hair cuts are a good thing!! How about a dip dye! I am approaching my third year anniversary this March and I think looking back that some of the most stretching times emotionally were just before my two year as the realisation finally hit me of what had changed but that said this past year has still brought gifts of healing and progress just not at the same pace but it will still come, ask anyone here. Casey I fully can understand your desire for things to improve quicker but this experience is sure a teacher of patience whether we like it or not. Poni, I'm sorry for the loss of your horse but are you still getting to spend any time with horses, I think there is definitely healing in that plus just getting out helps the mood. I took on last year a part time share for my daughters who both ride, it was a big commitment for me, I didn't know if I could physically manage it, the grooming, tacking, mucking, plus driving there and back but together we did it and I learnt a lot knowing nothing really, and the horse, well let's just say he was very gentle and good to me and that moved me on a lot in my emotional recovery, I had to be calm and steady so I learnt from him. I'd quite like to get involved in riding for the disabled and my plan is to look at that this year, do you have anything similar? I hope this year Is positive for you and yes keep faith and hope for continued improvement. The sah makes us lose so much of who we were but each day has something worth smiling about even the dreadful ones, I truly believe that.

Elizabeth, sending positve thought to you and him indoors across the Atlantic. No you can't fix him nor him you but you can be kind to each other and most importantly yourselves. There is no reason on earth why he should know what to do here, no one does when it happens and we each have to find a way to reach a new balance and level of recovery that we are comfortable with . You have a lot of plans this year, I know that I also had a lot of plans in place in my first year of things we had in the diary. I was 39 when I had my SAH with very young kids and let's just say that cancellation and reorganisation became a common landscape in our family as realisation hit that I couldn't partake at the pace and capacity I had prior no matter how much I wanted to and didn't want to let people down. It was a big adjustment for all of us and even now my kids and hubby find it hard to realise I am not the same model as old. In computer terms it is like some of battery power has gone, most processes I can still do , maybe a bit differently, usually just as well but I can't sustain it For as long and don't ask me to multi task !! Karen is so right that you have to measure from the point of the bleed but that takes whole while to come to terms with. If you can avoid making any big decisions right now that might help to take the pressure off but I don't know how realistic that is but taking things one day at a time is a lot easier but again that is a big adjustment when you have been used to time managing life in a high pressure environment. Changing to ' how is today working out for me' is a really strange habit but nice all the same in my experience. Maybe it's a perfect time to take a career sabbatical ! PS just adding to this that I was very fortunate with my work/ career that my company understood the importance of phased recovery and the fact that I just couldn't do what I used to do, it was out of the question but also the severity of my bleed and physical effects enforced a prolonged period off work -14 months. It meant a cut in income and big changes at home but we knew we could just about cope as in a previous year hubby had been made redundant and we managed and tbh I just couldn't work, hey I could hardly walk! even now nearly three years in I am still managing a phased return but I have been valued and supported throughout which means I am now purposefully working at a similar level to previous but doing far less hours and with arrangements and terms that have allowed my brain to gradually rebuild stamina and learn new ways of doing things but I appreciate that is not possible in many working environments.

Good to hear he didn't lose consciousness. that's positve. Sorry I think I may have put the link to a specific section on the Headway site rather than their home page, but they have some great resources but if you check out the effects of brain injury this can help explain more about the after effects and yes that does depend on the severity of the bleed and trauma. I guess I was trying to clumsily say that even a milder injury just like concussion the effects can be startling more longer lasting than outward appearances may suggest but that's the hardest thing with a brain injury, we all look pretty fine outwardly.

Elizabeth I think they can't give concrete answers as the last voyage of real unknown territory is that of our amazing brains. Medicine know about bones, the heart, even some cancers and can predict some outcomes but when it comes to brain injury it is highly personal so they shie away from predicting. If his colleagues are supportive then I would strongly suggest a even more gentle return to work than he has right now if the headaches are a sign to go by to give him time to heal the brain which after all is his most important asset when it comes to the job he does. I couldn't watch any TV at first and then after a while I could only manage gentle programmes like the Waltons!! It was very galling but that too with time has improved. He needs to listen to his brain. Best of luck

Hi there. First welcome to BTG and also well done to you and to your husband for the recovery he has made so far. I can understand how he is feeling frustrated that here he is with a event/ condition that is 'fixed' in the medical sense but little attention is paid to the effects that this bleed will have had on the conscious state and ability of the mind. He's a surgeon, he understands more than most the consequence of 'blood' being where it shouldn't in the brain lining' and that is going to have an effect but also he will be used to seeing people just pushing through and getting on with discomfort as a natural part of their recovery but my personal experience is it just doesn't work like that for the brain recovery, , yes we get on with it but we have to be gentler in approach otherwise the control centre lets you know. He is doing amazingly well if he is managing all that stress and concentration only three months on from a bleed so I do believe you can really hope it will improve for you all longer term but everything I have read and learnt would suggest that the more he can reign in the cognitive demands At The beginning then he will see benefit in his recovery. I think there is a lot in the press in US about brain injury in sport and concussion and the same principles apply here, rest lots, be gentle with the bruised brain. You wouldn't attempt to run a marathon a few months on from a ripped Achilles , I think it's similar. I would find ways to pace better in recovery and gradually build up the cognitive demands of the job plus lots and lots of water and mini breaks in his day, not easy given he is working in a demanding medical department but worth trying to accommodate. I would strongly suggest visiting a neuropsychologist as it helps chart deficits. I don't suggest this as a reason to dwell on what has changed but rather understand what is different so he can begin to adapt his style and maybe change his way of working from old. Me for instance I can't concentrate at the computer for longer than 2 hours at a time, that's not a comparison to surgery in any way but even that took me ages to achieve if I didn't want to be wiped out mentally and physically. It also gave me some insights into why things were proving hard. My headaches improved once I understood this. The general theme on here regardless of severity of bleed is that it is very difficult to just resume life as we knew it, some will of course and in time I am sure you husband will resume his familiar role entirely but it may need to be done differently than how he used to. In the UK Headway have some excellent resources which may help but definitely keep hope that it will improve, it will just be different https://www.headway.org.uk/severe-brain-injury.aspx

Hi Nat, sorry to hear it's all a bit cruddy right now with head pain and confusion and like the others say do go and get checked out, I guarantee a high majority of us get scanned/ checked in the first months after recovery when things just aren't right up top and can't be explained away. If you have noticed a deterioration in sensation then it's something to question and investigate but not necessarily anything to be concerned about but I would phone the neuro team or go to your gp and ask them to phone to discuss, Don't under estimate the impact of the fear and worry which may only now be making itself known and which makes everything ten times worse , (I know I still haven't got that cracked ), any worry and stress really is hard for us as our brains just can't cope with that chemical reaction I don't think! Three months in there is a massive amount of healing going on but think whether as you felt a bit better did you start to do more and has more sensory load ? It could be your brain is letting you know it's not ready to shift gears just yet whilst it uses masses of energy to heal so try dialing things down and resting and drinking fluid and regular meals and see how that feels. Hope it passes and it's just a step back before going forward, often my dips have been followed by some strides in healing and I hope it's the same for you.

Hi Kris Thanks for this, it's a good exercise to see the changes in a year and thinking back to last January was a good thing as I hit a recovery wall this time last year and was finding things pretty hard...a year on and things are so much better with me. My healing in the last year really seemed to improve once I had reached acceptance to a certain extent of how much has changed that I just have no control over and I really seem to be at peace with that most of the time and have less grief for the activity and lifestyle I lost with my sah so maybe that's not physical healing but emotional and at the same time I have found much more contentment in the day to day living and enjoying the small things that make me smile. I can do so much more now, like you Kris my stamina has improved mentally and physically in the past year but I still have to pace myself and watch for over stimulation. My emotions are less likely to surface as often as they did but equally I don't bottle things up now, it gets aired be it through words or tears ( or a song!) and then I move on so I have the gift of my sah which means I no longer dwell on things as they are forgotten quickly I achieved some of my post sah goals like flying for the first time and have new goals for 2015. My happy days Are those when I am in a steady state, one where head pain is tolerable, balance is good and stamina is regular , that's a good day and I can smile at the end of it and when it's not I know now that it will pass.

Just sharing this link of useful apps and reference sites which is compiled via The Tavistock Trust for aphasia which can help someone post stroke or sah who has aphasia http://www.aphasiasoftwarefinder.org/other-app-list