Gemma B-B

Hi Jan, I started to return to work around 8 months post haemorrhage. I am a secondary school teacher and started off still on a sick note and going in to sit in other people's lessons and helping out where I could. I then started a phased return and reached the end of that just before the summer, which was 18months post haemorrhage. I have managed to return to work, but am now part time (4 days a week, with Wednesday off) and also have some adjustments, such as teaching no six period days. I echo what Super Mario has said - if you are interested in going into a school then get in touch and see what they say. I do not find going into work as bad as what some people think it might be - mainly as my classroom is quite quiet and controlled. I believe I would find other environments, such as an open office, much harder to deal with. That being said, when I did return to work people kept asking me how I had filled my time off (though to be fair the rehab took up a fair portion of my time) and I found that I was able to fill my days with various bits and pieces. I hope you find something you enjoy doing. Gemma

Thank you Jan To be honest going back to work in a school has not been as bad as what people might think - actually teaching some lessons and then having a break suits me well. Take care, Gemma

'There' is difficult. I have also found similar things when talking to others during my recovery as I think to other people 'there' is back to what you were prior to this happening. However, I guess 'there' is actually wherever you want it to be and that might be different at different stages in your recovery and at different times. I guess as other people have said on here it is a way for people to show empathy and encouragement towards you - but it can be difficult to answer. On a slight side note - Win what you said about being asked about why you are in a wheelchair made me smile. I often get asked about why I walk with a stick (I think especially because of my age - 29) and when I relay the whole heart condition/heart surgery/brain haemorrhage/hydrocephalus/shunt/spinal arachnoiditis and cysts, I often think people are sorry they asked! Gemma x

Hi Jan, Only just seen this - I had my haemorrhage 19months ago and started my phased return to work as a Secondary School teacher in September. I spend a whole year on my phased return to my teaching post and my head of year role. In April I was offered the opportunity to apply for a promotion to be deputy head of KS3. After weighing up all the pros and cons I went for the job and got offered the promotion. My main reasons for going for it were that it was a role that interests me and also that it comes with a higher free period allocation so I will not spend all day teaching, but will have some time doing other tasks. This mix of teaching and other tasks suits me more now post-haemorrhage as a full teaching day is not possible for me now. My school were also good enough to offer me the post part-time so I now work 4 days with a Wednesday off. On the four days I am in work I only teach a couple of periods and then do some other work. I am currently on summer break and next academic year will be the real test of how I handle this new role and being back in work so we shall see how it goes. I think a life changing event such as an SAH puts a lot of things into perspective. It certainly has done for my husband and I. My husband is currently head of subject at his school and he is looking to change his role and to going back to just teaching and this is what he wants to do and he wants more time free to enjoy life. We both agreed after my haemorrhage that we would focus on what we really wanted in life - spending time with each other and our family and friends. Gemma xx

I am 19 months down the line and am still waiting for DVLA approval - despite the fact that they have had my paper work for almost 10 months! I think the backlog is still well and truly in place though to be fair I think my case is quite a complex one, which is why it is taking so long (I have already had to go to a medical and a disability driving test). I think it is definitely worth chasing up with the consultant, as that held up mine at the start and the DVLA will not even start to look at it until they have everything. Also echo what people have said on here about check ups. My first one was around 6 months and then I have been back twice since then to have scans and check the shunt is working. I think I am now going to a yearly check up. Gemma

Hi Clare, Yes I am hoping this works out best for me. I did work some 3 consecutive days on my phased return as I had to work it around my existing timetable with my examination classes on it. Doing that let me know that working 3 consecutive days doesn't work for me at all. I also can't imagine doing a 5 day week at the moment and am not sure it will ever be possible, however one year ago I hadn't even started my return to work, so anything is possible. I am hoping 4 days works for me, especially with the fact that I won't teach a full day on any of my days in work. For me at the moment I find that I can do some things most days, but I need plenty of breaks within those days. I and my workplace are both prepared for the fact that I might want to change this though if it doesn't work out. Obviously working 4 days has the advantage that it earns me more money at the moment so continuing with that would be ideal. I am aware that with the spinal issues I have been left with my condition might deteriorate over time so it is also possible that in the future I will need to work less so I wanted to make the most of my career now. My Wednesday off will definitely be just that - I have used my day off during my phased return to have a lie-in and to have some 'me time', which I find I definitely need as going out and interacting with people can still be an issue. I also still don't have my driving license back yet so getting about on my day off is an issue anyway. I am hoping that I will get it back soon as I have been sent for a medical by the DVLA and have also sat a disability driving assessment as well. I hope you are doing ok and that your cognitive test results prove informative. Gemma xxx

Thank you Louise. It has been tough returning to work. I have just finished my phased return and am now off for the summer. From September I will work four days a week with Wednesday off. On my days in work I will not teach any more than four periods out of a six period day so I have some time off each day I can use to work or rest if needed. I am hoping that this works out well for me but I know all I can do is try it and see if it works for me in the longer term.

It is a very interesting idea - when I have thought about it I am not sure which year has been harder (although to be fair I am only half way through the second year). My first year was tough in terms of the immediate aftermath of the haemorrhage and the hydrocephalus. It was a steep learning curve in terms of learning to deal with these. I did, however, make more rapid progress in terms of what I achieved then what I do now. I spent most of that year in rehab and started to make a return to work, although I was still on my sick note for all of this. By the end of it I felt quite happy in terms of what I had achieved and optimistic in terms of what I might go on to do. I would agree that the second year is quite tough in terms of dealing with the long term effects of the haemorrhage. For me this has not just been dealing with the cognitive changes but also dealing with the spinal issues that I have developed as a result of the haemorrhage (arachnoiditis and arachnoid cysts - apparently these are a rare side effect of having a brain haemorrhage and of course mean more trips to the hospital and potentially more surgery). This coupled with my phased return to work have been tough and as I have said previously I have second-guessed myself a lot in terms of whether I am doing too much in terms of this. I am now at the end of the academic year and have settled on a part-time timetable for the next teaching year, so will see what that brings. I agree with what other people on here have said - I think the recovery from this is all about pushing yourself a bit and trying things out and then adjusting as needed. I also agree with the acceptance of things - I spent a while struggling to walk without any aids and once I started to use my stick and my AFOs more things got much easier. For me it is a fine balance between accepting how things are now and pushing slightly to achieve a bit more. Good luck with everything x

Hi Jan, As Daffodil has said I think it depend on where you are and how severe your bleed was. I was treated in a specialist neuro hospital and I think that definitely helped in terms of accessing those sorts of resources. I sat my first lot of tests as an in-patient - I know this was because I was showing signs of cognitive damage whilst I was in the hospital and I had a severe bleed and had been on life support for a while, so they were pretty sure there had been some damage done. I then sat some a couple of months later to see if there was an improvement. It was probably more useful to me the second time around because then I could engage with the results and that was useful in helping me see where my issues lay and then I could focus on them in rehab. Good luck with everything. Gemma x

Thank you for keeping us updated Clare. The neuro tests are always interesting. I have sat two lots at the hospital and also done some in rehab. Interestingly I tend to perform much worse in the tests then what I do in day to day life. My OT was always surprised with my poor results in terms of speed of thought when I have managed to go back into work and teach lessons. I think this is maybe because my job is very structured with a lot of routine so perhaps I find that easier to cope with then some of the new things in the tests. I tend to see evidence of the executive dysfunction in the silliest situations - for example not be able to pick out a face wash in the shops if the one I usually buy is not in stock! I think they do try and measure you against what you were like beforehand - my reports talk about how I have 'severe deficits based upon pre-morbid estimates'. I think they based what I was like before on my educational background and the job I did. I know in the hospital my husband and parents were asked about my qualifications and other tests I had sat before I had the haemorrhage. I hope the final lot of testing goes well for you and the results help you plan things out. Keep us posted xxx

Hi Clare, An interesting post so thank you for sharing. I have sat two lots of neuropsychological tests - the first was shortly before discharge from hospital and these showed some major deficits, although I wasn't aware of it at the time as the results were not fully shared with me. When I started the process of going back to work I was referred back for more tests (mainly as my first set of tests showed I might not be fit to return to my job as a teacher) and I sat these about 4 months after my haemorrhage. I also found them very exhausting so I think splitting them up into smaller chunks is a good idea. Although they were exhausting, it was very useful to sit them. They did show the areas where I had issues and that allowed me to work on them. Hopefully it will be a similar process for you and the team at the hospital can offer you support after them. Your comment about fatigue is also an interesting one - just this afternoon I was at a works retirement event at a local hotel. Someone I work with asked me how I was doing and 'if I still get really tired'. I said to them that it was getting better but that even now, 18 months down the line, I can still be floored with fatigue. My time spent in rehab helped me learn what things trigger it for me and what my warning signs are but sometimes it still creeps up on me and I have to take a step back and re-evaluate what I am doing. I hope your tests are useful for you. Keep us updated and take care xxxx

Hi Rachel, I do not have any personal experience with it, however my Father-in-law has it and has done for around 10 years. I believe he first got it after a filling which affected the nerves in his face. I know that when it flares up he finds it very painful and difficult to cope with. He tends to get it more when he is feeling stressed and overwhelmed. I know he has taken painkillers for it in the past, but as it is nerve pain. I believe the pain killers cannot actually lessen the pain, they just stop you feeling it or being bothered by it as much. This meant that the painkillers were quite strong and he did not like their effect on him so now he tends to try and limit the things he finds that trigger it instead of taken the pain killers. As others have said on here it would be best to follow this up with your doctor to see if they can give a diagnosis and suggest any course of treatment. Good luck, Gemma

Hello, I had my brain haemorrhage during heart surgery and although I came around after the surgery I then went into a coma due to the size of the bleed and the hydrocephalus. After having an EVD fitted to relieve the pressure on my brain I was kept in a medically-induced coma as I was on life support. Unfortunately I cannot offer you any real first hand experience as I do not recall having the brain haemorrhage or anything else for about 3 to 4 weeks afterwards. I know that whilst I was on life support my family were around me and talking. As I was taken off the sedation they were all around me and waiting for me to wake up properly. I did not appear to be coming around until my husband said he was going to have to leave for the night to get back to our house - it was at this point I came around properly and told him not to go. Although I do not remember any of this it would suggest to me that I could hear what was going on around me whilst still under some sort of sedation and whilst coming around from it. I also know that what helped me through that time was my family - my parents and husband in particular who came to see me everyday and spent time helping me process everything and get things straight. I was very confused when I first came around and it took weeks for me to even begin to get things straight and to begin relearning simple tasks (such as getting dressed etc.) I agree with what others have said on here - it is probably worth talking to Todd's medical team to get their input about what is going on and what can be done at the moment. You are obviously very concerned at the moment, but as Subs says it is also important that you take care of yourself as well. I wish you both luck. Gemma x

Yes I find the amount of aftercare slightly odd - they seem very concerned with finding a cause if they can. I think it is partly because I had the haemorrhage during heart surgery and will require further surgery in the future as well. I am actually not that bothered about finding a cause - I think it is probably just one of those things. As you said Louise, getting on with my life is my main priority. x

I was knocked out for my cerebral angiogram in the hospital and don't remember much of my time there anyway, so I am afraid that I cannot be much help there. I do understand your reluctance to have one though. My consultant has also recommended that I have another one as they are still trying to work out why I had the brain haemorrhage. I may also have to have some spine surgery (I have arachnoiditis and arachnoid cysts) so I think they want to do the angiogram before that. I have actually managed to have them put if off until I have next seen my consultant as I want to know in more detail the reasons for doing it before I agree to have it done as having it done will mean more time off work and more time in the hospital (where, between the brain haemorrhage, my heart condition and the spinal issues, I already spend a lot of my time). I know with me it is part of them trying to find the cause of the haemorrhage but unless they think it has a good chance of finding something I am not keen to have it done. It is reassuring to hear from people who have had them done though, so thank you for that. I hope it all goes well for you with the angiogram and your spine surgery. Gemma x

Hi Greg, Yes it definitely takes longer than what you think. When my OT first told me it would take at least a year I couldn't quite believe her - now I definitely can! Luckily for me my workplace are ok with my long phased return. I tend to spend a couple of weeks at each stage before picking up anything else. I also think I am probably nearing my limit with the four days and the amount of lessons I am teaching, so will need to then sit down with work and see what will be suitable come September. This past week has gone better thank you. Just always take me a while to get used to the new routine. My hospital appointment also went ok - was just a spinal MRI. Have a load of consultant appointments coming up in the next few months so that will keep me busy! I hope you are having a good week too. Roll on the bank holiday weekend Gemma x

Hi Win, Yes I think it might be worth mentioning it to your doctor - you never know what will come from it. I currently manage around my house and workplace ok and then use a stick to go outside with. xxx

No, I have been very lucky with the amount of aftercare I have received, both in terms of medically and also rehabilitation support. I think most of the medical care was down to the fact that I had a shunt fitted and they wanted to check that every 6 months at first to make sure it was still working ok. That meant that once I started to develop the spinal issues I was already under a consultant who could assess me and refer me on as necessary. I have quite a few appointments coming up in the next few months - I have been referred to a host of specialists as they are trying to work out why this all happened to me. The specialists I have seen can't quite believe that I have the congenital heart defect, had a large brain haemorrhage (with no apparent cause), got hydrocephalus and then got arachnoiditis and arachnoid cysts on the spine. All of these things are quite rare so they do not know of another case where they have all occurred in one person. I think they are looking for a genetic link between them. I had a full brain and spine MRI last Saturday down in London and got chatting to the radiographer. He told me that arachnoid cysts are usually congenital (i.e. there from birth) and therefore it was possible that I already had them on my spine but they were not causing an issue until I had the haemorrhage and got hydrocephalus. He says he would love to have an MRI of my spine from 10 years ago as then he would know for sure. It was interesting to chat to him as he raised some interesting points which I will bring up with my consultant in June. The June appointment will also be the point at which I find out if the plan is spinal surgery or monitoring for the next few months. I am hoping for the monitoring as I would rather not have the spinal surgery, but we shall see! Gemma x

Fatigue is definitely the killer thing. As I think I mentioned I went up to four days for the first time last week and by the end of the week I was shattered (with the usual brain symptoms to really let me know I had overdone it - headache, aphasia etc.). I spent the weekend feeling quite defeated about it all. My husband has tried to talk me out of it as I did have a busy week last week (on my day off I was at the hospital being fitted for AFOs to wear on my legs due to my spinal issues and I spent Saturday morning having an hour long head and spine MRI). I am hoping that it is the combination of a lot of things last week that contributed to my fatigue and once I get used to the 4 days it will not be as bad. I still find it a frustrating and difficult thing to work around. Oddly enough the classroom hasn't been as bad an environment as I thought it would. Generally speaking it is ok as I am in charge and can make them all be quiet which suits me. I actually think working in an open office or something similar would be worse for me as I find it hard to block out any extra noise and it really fatigues me. With the teaching timetable I am currently on I can teach a lesson and then have a break and maybe do a bit of admin or marking before teaching a bit more. The mix of activities suits me and having my own classroom where I can work in peace is also good. Good luck with building up your hours. You are definitely going about it in the right way by testing things out and going forth or back as you need to. I hope you find a good solution that works for you. Gemma

Hi Kerry, I had my brain haemorrhage last January. I have no memory of the subsequent 3 weeks in hospital. My memory starts to come back for the last couple of weeks in the hospital, but it is patchy. I had quite a severe bleed and during my time in the hospital the staff noticed that I was having issues with various things so I was sent for a range of neuro-psychological tests shortly before I left the hospital. I do not remember these very well but I remember finding them tricky. Upon discharge from the hospital I was referred to a specialist brain rehabilitation centre near where I live. When I got through all the information I can remember reading and thinking 'this is not for me - I don't have any issues' - I told this to my husband and family at the time. Anyway during those first few weeks out of the hospital I started to notice memory issues - forgetting if I had done a task, going into a room and forgetting why I went there, not being able to follow a TV program, losing the car in the car park, getting lost when returning from the bathroom in a new place and not being able to find the right word. I just dismissed most of these. Prior to my haemorrhage I worked as a teacher. Last May I started trying to return to work - I was told this was not possible due to my issues from my haemorrhage as shown on the tests I sat coming out of the hospital. I went to resit those tests last May and they showed a had a range of issues - mainly in attentional memory and around executive dysfunction (issues with decision making, organising etc.). I was assessed by the rehab centre I was referred to upon discharge and started there in June - so much for not needing them. I spent 10 months in rehab following this. I found it very useful as it allowed me to see my issues and then find ways to work around them. I was taught that following an SAH it is usually attentional memory that is damaged so it is not that we forget things, but rather that we do not form a memory of them in the first place as we are not paying 'attention' to them properly so no memory is made. Through my rehab I came up with strategies to help me like lists, calendars, notebooks etc. My occupational therapist always encourages me to 'do' something with any information I wish to retain, such as repeat it back to myself or write it down. I wonder around my house looking like a madwoman, but it works. In terms of returning to work, I had to sit an assessment to prove I could still teach. Following that I spent a term building up stamina in the work place. I began teaching again in January and I am currently doing 4 days a week (although none are full teaching days). I am on a phased return until the summer holiday, but imagine that I will remain at 4 days next year. The strategies I have learnt in rehab have been instrumental in me returning to the work-place. The point of this long story (sorry) was to say that the issues you are experiencing are ones that I believe are quite common following a SAH. As others have said on here I always find them worse when I am stressed or fatigued. I imagine that your work place is quite a stressful fast paced one, which might not help. You mention that you have had your MRI scan. I hope that comes back well for you. When you see your specialist you could mention the issues to them as potentially seeing a neuro-psychologist might be useful as they might be able to give you tips on how to deal with any issues, especially within the work place. Keep us posted on how you are doing. I hope it all goes well for you and well done on returning to work so quickly - I worked in a kitchen prior to going to Uni and am not sure I could do that now! Gemma x

Hi Greg, As you are aware we too are at a similar point in recovery as I had my brain event last January (as I recently found out it was a intra-ventricular haemorrhage I guess I can't call it a SAH anymore!). Anyway, also had an EVD and then a shunt fitted, although I was lucky not to get any infection. I don't think we can underestimate the amount it takes from us to go through surgery such as those needed to fit an EVD or a shunt. Having an infection on top of that must also be tough going. In terms of fatigue - I have no concrete answers. Fatigue for me is still one of those evasive things - as soon as you think you have a handle on it something happens and bam! you are back where you started (or near to it). Like you I did some work with my OT on fatigue and one thing I found useful was analysing what things actually made me more fatigued - I was often surprised as what those activities were and it was helpful for me in understanding the different types of things that now make my brain tired. In terms of the return to work - I have been on a phased return since January. I have literally just started my first four day week following the Easter holiday. Although I manage to go into work for technically 'full' working days the reality is that I am teaching a reduced timetable - for example 3 or 4 periods out of 6 - which is less than I taught before my haemorrhage. I imagine going forward that what I will be able to manage is (hopefully) 4 days in work with a Wednesday off. With that I won't actually teach any full (6 period) days but will teach 3 or 4 period days and then do some marking/admin where I can in between. Although on the face of it I will be doing 4 days in work this will involve adjustment as only part of it will be spend teaching and the rest will be spent having breaks or doing other tasks. My work has been supportive thus far and they are aware of what my limitations might be, so hopefully this will continue. I am also finding adjusting the my altered physical conditions somewhat difficult as now, due to the spinal damage, walking around is much more difficult. I guess my only advice in terms of the return to work is almost to be as open minded as possible about how you could return to work - for example would only doing morning suit you better? Would having a longer break in the middle of the day help? You could then sit down with work and see what they can offer you. I think the other unfortunate thing, which you have alluded to in your post, is the fact that going into work often means sacrificing some out of work activities. I find the same thing as I simply do not have the energy for it all so have to find a balance of working and also getting some enjoyment outside of work. The only other thing that I have found that works for my is what my OT calls 'total cognitive breaks' where I go and sit in a separate room and take a break with no noise, people to chat to and no computer or mobile to look at. I find these do work well for me as the 'old' me would always be doing something, even in a break, such as checking emails and the 'new' me simply cannot cope with that as I once did. Sorry for the rather long rambling email - not sure if any of it is any use. Please keep us posted on how you are doing and good luck x

I think I am still a bit too much in the midst of dealing with the after-effects of my brain haemorrhage to truly assess this, but I find it an interesting idea. I know I have definitely changed as a result of my brain haemorrhage, however I am not sure how you could live through something like that and not be changed. Beyond the physical and cognitive changes I am left with I can also relate to the stepping back and looking at what is important in life. Potentially this could be seen as growth as I think it makes you think more about what you are doing in life and if it is truly worth your time and effort. Gemma x

I don't actually remember having my brain haemorrhage. My final memory of that day is going onto the ward I was going to be staying on to have heart surgery and then that is it for over three weeks. I had mine during the surgery and apparently awoke complaining of a headache. I was taken out to see my husband and also complained of a headache to him. At the time they thought it was a reaction to the pain medication/anaesthetic. My husband started to talk to me about his dinner and I told him I felt sick and the lights were too bright. I then fell unconscious. When I was checked on later I did not respond at all and was sent for a CT scan which found the bleed and was then transferred for brain surgery. Overall I think it is a blessing that I do not remember!

Hi Clare, That is very interesting to hear. I got the impression that Intra-ventricular Haemorrhages and SAH are connected and can occur together and that seems to be the case. I have also not had my next appointment with my Neurosurgeon yet so when I do I will be asking them further questions about it. I think seeing a Neuro-specialist nurse post SAH seems quite common at a lot of hospitals as that what I had post-SAH as well. At my first appointment I was still a bit too shell-shocked to get much from it so maybe they are a bit too soon after the initial SAH. My specialist nurse has also been really good though. I hope your new job is going well for you? It is interesting as you do adapt to not having a car as my husband and I have as well. I know in the long term I will need one again though as there is no public transport where I live. Hopefully the disability driving assessment will go well and a hand controlled car will be a viable option. Gemma xx

A roller coaster sounds about right - it just never seems to stop! The news was quite unexpected as I had obviously thought I'd had a SAH. It does make sense though and the bleed spread to the subarachnoid space - it just didn't start there. The medical team have been excellent though and are definitely looking at all angles. There does seem to be less information out there on intraventricular haemorrhages than SAHs, but maybe this is due to the likelihood of them occurring? I have more scans booked in next month and am then seeing the spinal specialist at the National again. I know he wants to do the spine surgery before the end of the year so I guess we will be gearing up for that next. I am currently on my phased return to work so the plan is to get as far into that as possible and then sign up for whatever suits me for September - I know it will be part time, I am just not sure of the distribution of hours/days yet. Am also still waiting on my driving license and am going for a disability driving assessment as my rehab and GP are pretty certain I will need to learn to drive a hand controlled car. So that is also going ahead too. Thank you for your best wishes Daff. Hope you are doing well xx