Gemma B-B

That is very frustrating Clare - feel free to rant away! Hopefully your area manager will come back and allow you to work on the Saturday. The only other thing I can suggest if they are still being awkward is to potentially contact the hospital where you were treated to see if they have any rehabilitation specialists that they can refer you to. I was treated in London and they have a rehabilitation department that deals with returns to work, including the legal side of things. Potentially a letter/phone call from someone like that would help your case? Good luck! xx

Hi Clare, You have my sympathy - returning to work is tough! Well done for getting back to the hours you have managed thus far. It is an excellent achievement. I have also had some issues with my work place with this. When I spoke with my head they said that a 10 week phased return is all I could be offered as that is what they could offer to everyone. This could potentially be extended once I was on it but that there would be a finite point to it. I am currently under an OT who is working with me on the return to work and she has said that a 10 week phased return is not suitable after a brain injury of the level I have had and the cognitive and physical issues I am left with. She does not think I will return to full time hours within that time so what she has put forth is that I remain on my sick note at the moment but go into work to do none contractual tasks (I was a teacher before all this so like you need to be on the ball). I will use this to build up my stamina and then start on the phased return. This is good in some senses as it gives me more chance to get back to near full time work, but obviously I am also losing out on pay etc. This has managed to extend it out somewhat but I know there will a point where I need to sit down and decide what I can do. As Daffodil has said it is not nice but potentially you might have to face up to accepting part-time hours for a while. I have also spoken to my work place about this and they have said that if it comes to that I could potentially have an amended contract and that if in the future I wanted to try and do more I could try. I know it is difficult to come to terms with but it might be worth sitting down with your employer and seeing exactly what your options are. Good luck with it all Gemma

Hi Issy, I had my NASAH in January and I have also had increased noise sensitivity too - when I first came out of hospital I could not have the TV on or any extra noise. I also avoided going to town or the supermarket. Lucky for me I live in the middle of no-where so it is very peaceful! When I started seeing my occupational therapist we discussed this and she told me I had to stop avoiding the situations I didn't like. This was just the advice I was given and may not be for everyone. We sat down and looked at what I actually found difficult - for example with the TV it was actually the combination of noise and the visual stimulation, My OT had me start to go out to the places I found difficult for short periods of time to build them up. This has involved things like going to the supermarket, going to a restaurant and going on a bus. It has been tough but over the past few months I have managed to tolerate it more. I worked as a secondary school teacher prior to this so it was important that I tried to get more used to the noise in order to be able to return to work. Trying to do some small bits for a limited time has worked quite well for me. I always make sure I have an 'out' too - for example my husband brings the car and I can go sit in it if needed. I still find some things very difficult but overall it has improved. Good luck! Gemma

Dear Gillian, I too had a NASAH in January this year. You have my sympathy with the return to work - it is very tough! I was a secondary school teacher prior to my SAH and have started to make my return to work this September. I am currently undergoing a rehab programme and am going into work once a week to undertake different tasks with an occupational therapist, which has been useful. I do still get headaches - especially if I have overdone it, but I am trying to learn the right amount of activity to minimise them. Hopefully seeing your neuro-surgeon will help give you some answers. If they could refer you onto some form of rehab that might be useful to aid with the return to work? Mine has definitely helped me with things such as the dealing with noise/stimulation and my new inability to multi-task. Good luck with everything and take care. Gemma

Hi Jerome, Welcome to BTG. You have had a rough few years and have my sympathy. I had my SAH in January following heart surgery for a congenital heart defect - just when I was dealing with one medical issue another one crops up! It is exhausting and it is difficult to balance the various issues that comes from them all. I too found that I had muscle twitches and other things after my SAH. These have got better over time to a certain extent but as others have said on here if you are unsure or worried do see your doctors to get reassurance. Good luck with your recovery. Take care, Gemma

Hi Davis, I had a NASAH this January. The MRI I had afterwards showed that I also have an incidental aneurysm too. That will now be monitored as it doesn't need anything doing to it at the moment. I guess one of the positives to come of all this is that it will be monitored, which obviously dramatically reduces the chance of anything else happening. I have also had strange sensations in my head. This is mainly around the areas I had surgery - especially the EVD and shunt. I also find any big changes in pressure tend to affect me too but things have got easier with time. Take care, Gemma

It is ok I checked with my husband (I don't remember any of my stay in the hospital but the very end) and he says they scanned me before I had the shunt when I had the EVD drain and also once afterwards as well. I also went for my 6 month follow up MRI in July as well where they checked the amount of blood remaining, the shunt and my aneurysm (although I had a NASAH I also have an un-ruptured aneurysm in my brain - never simple!). Perhaps have a chat with your doctors and see if an MRI is an option at all. Good luck!

I don't think I get headaches from the shunt except when there is a storm so I guess that is connected to pressure. I think I mainly get them from fatigue when I've overdone it. I sometimes get pain when I have lain on it funny but it has got better over time.

As far as I am aware you can use scans to diagnose or check on hydrocephalus. I believe you check the size of the ventricles in the brain. Maybe check with your doctor? I know you are in the USA but the NHS website says this: http://www.nhs.uk/conditions/Hydrocephalus/pages/diagnosis.aspx

Hi Paul, I am sorry to hear your doctors appointment did not go well. It is very frustrating when things like that happen so you have my sympathy. It is difficult when you don't know if you have the hydrocephalus or not any more. I have had my 6-month follow up MRI and was told that I do still have hydrocephalus, however I do not get headaches a lot of the time. I think this is because the shunt is working correctly. I tend to only get them if I have overdone it or if their is a lot of pressure in the atmosphere (which is very odd!). I know it is difficult when you don't know but you can be reassured that if you do still have it that your shunt is working at compensating for it. I agree with you on educating yourself about the SAH and hydrocephalus - I personally always think it is better to be informed and then you can make decisions based upon that. I have been very fortunate to have undertaken rehab in two places - first in the hospital where I was treated in London, which was a support group for people who have had SAH that ran for 6 weeks, and secondly I attend a brain injury charity locally where I have individual physiotherapy and occupational therapy (I had quiet a severe bleed and have been left with some movement and cognitive issues). They have helped me understand what has happened and what signs to look out for. I also definitely recommend getting a medical alert bracelet or shunt-alert card. It gives you that extra reassurance in case you aren't able to communicate what is wrong with you. Take care Gemma

Hello Paul, I am 28 and I had my NASAH in January this year. Like you I developed hydrocephalus afterwards and had a shunt fitted in February. I have no real memory of any of that time and it wasn't until round March that I started to form memories and think about the implications of everything that had happened. I also had questions about what would happen in my shunt failed - I live in a rural part of the UK and am around 35mins from the nearest hospital and 50mins from one with a neuro-centre so wanted to know what I should do if it failed. I went back to see my neuro-surgeon at the start of June and they were very reassuring. They said that if the shunt started to fail I would start to get symptoms such as the confusion/balance issues etc that I had in the hospital. They described it as being quite a gradual process as it would take a while for the fluid to build up again. They also said that I would be the first to notice that something was off. I would then need to go to the nearest hospital and then be transferred to one with a neuro-centre to have it repaired or replaced. I know you are also concerned that you would collapse and therefore not get to a hospital. I also have a heart condition and wear a medical ID bracelet that has this and the fact I have a shunt on it. I also have a medical alert card with the information on. You could consider getting those sorts of things too in case of an emergency. As others on here have said I would definitely recommend speaking to your doctors about your concerns. They should monitor the shunt anyway and check everything is in order. Seeking counselling or something similar may also help with the anxiety. I know there are a lot of stories out there about shunts failing and I understand that it may not last a life-time, however as others have said on here I think it is a matter of making sure you seek treatment if you are concerned about it in any way. I hope your meetings with your doctors goes well. Gemma

Hi Laura, Glad to hear your dad is doing well and the physio is helping. What the physio has said to you makes sense about the brain having to work hard on the movement. Even now I find when I am more fatigued my body simply doesn't do what my brain wants it to! My husband has also been to my physio with me so that he can help me with the exercises at home. It is very useful to have that family support and I am sure your dad will appreciate you and your mum doing the same for him. Take care Gemma xx

I had a lot of confabulation in the hospital as well - including things like thinking I had more than one set of parents and saying I had done stuff which I hadn't, but as Laura has said this became a lot better towards the end of the hospital stay and definitely once I came out of hospital. My family also brought me in extra food so once your Dad is cleared to eat it might be worth stocking up on some treats. I also agree with what Laura has said about being your Dad's voice. When I left the hospital I didn't ask any questions at all about what had happened to me - at that point I was just not mentally able to deal with it. I am still finding out things 6 months later - for example what type of shunt I have and what this means in terms of its maintenance. Keep questioning the nurses on his care and on things such as when he will be able to try walking if you are concerned about how long it is taking. I hope your mum is feeling better soon - I also remember family/friends avoiding me for weeks if they had any sign of infection for fear of passing it on!

Hi James, Welcome to BTG. I am sorry to hear about your father but glad he is on the road to recovery. I had a Grade 4/5 SAH this January and also developed hydrocephalus for which I had a shunt fitted in February. Like you my family noticed a big difference in me once I had the shunt fitted. It is a very useful device During my stay in hospital I also lost a lot of weight and muscle mass. Since being out I have managed to put the weight back on and am working on regaining my fitness. I have been able to regain walking quite well and can now walk long distances without too much difficulty most days. I still have issues with stairs and I can't run yet and have difficulty with more complex coordinated movements. I am undergoing physio in an attempt to regain some of this which is exhausting but useful. Like your father I was quite fit and healthy before this happened (and I am only 28 as well). Hopefully your father's level of fitness will help him in his recovery. I have been surprised at how long everything has taken, however I have learnt that recovery from a SAH takes a long time. Even though I am only 6 months down the line I have made masses of improvements so there is always hope. It is good that your dad has had some physio in the hospital and is taking things slowly. Hopefully over the coming weeks you will see some gains from this and he can continue with it over the next few months. I know it must be very frustrating for both him and the rest of your family at this time but in the hospital they always do things in a certain way - I also remember getting frustrated with it as well though. If you are worried or concerned about anything try to speak to someone in the hospital about it to see what they have planned for your dad. Take care, Gemma xx

Hi Fay, Welcome to BTG I had my SAH this January also at the age of 27 - so you do have some company in that. It was a big shock for me too as all of a sudden life changes and at such a young age too - it is not something you ever expect to happen to you. Like you before this happened I was rushing around working full-time (I am a secondary school teacher and head of year) and then all of a sudden that stops and you have a lot of time off to think. I think you do stop thinking about it as much over time, although it is still quite a big thing in my life at the moment. I guess this is as I am still in the early stages of recovery and undergoing rehab. I think for me one of my main difficulties was realising what the long-term impacts of this will be - something which I am still dealing with 6 months down the line. Although mine was not caused by an aneurysm I did find out that I do have an un-ruptured aneurysm in my brain. I guess the good thing to come of this is that now that will be monitored for life. I have not returned to work yet, mainly due to the fact I sustained some cognitive damage and I am in rehab to help with that and my return to work. Well done for getting back into work and for starting the return to normality. Make sure you give yourself the time you need to recover. Like you I have thought that in the long-term a return to work part-time might be for the best so I can make the most of my time. Take care, Gemma xx

Hi Laura, Glad your Dad is out of hospital and doing well. I had my SAH in January this year and also developed hydrocephalus which led to me having a shunt put in. I lost just over a stone in weight in the hospital. When I came out of the hospital I didn't regain my appetite for quite a while, but when I did it came back with a vengeance. I also had a real sweet tooth, which is odd as before it happened I was definitely more of a savoury person. My husband and I have wondered if this is the bodies way of getting more calories after something like this. I am glad you also have the date for the cognitive assessment for your dad. I also experienced a lot of confusion and memory issues in the hospital and sat those tests upon discharge. This might sound odd, but although I had been told in the hospital that I had a memory problem and I had seen the evidence for this myself (such as the list of my things my husband had to leave by my bed) It wasn't until I sat those tests and couldn't do them that I really started to recognise that for myself (I also think it was because I kept forgetting what I had been told in the hospital whereas the cognitive tests stick in my mind more). It might be worth taking that into consideration when your Dad sits the tests. They are also quite tiring as well so your dad may need a good rest afterwards. Good luck with everything! Gemma

Some excellent points Macca. When discussing the SAH and its effects I have had a number of older people say to me that they have experienced a decline in their mental and physical stamina with age that is in some ways similar to the SAH, however much, much slower than with the SAH and often much less severe. You are correct that it is the sudden change with the SAH that leaves you reeling and often wondering how to get back to 'before'. I am definitely trying to focus on obtaining the best quality of life following this, whatever that ends up being, for both myself and my husband. That means that I need to be realistic about what I can now achieve both at work and at home and then work towards achieving a good balance. We shall see how I goes.....

I agree completely that the mental acceptance is a huge leap Daffodil. I know from reading on here that lots of other people have struggled with getting back to everything they were and had before the SAH. For me pretty much all of that pressure came from myself – I was very lucky that all medical staff and family were much more cautious on the timeline of my recovery, however I also found that difficult too as I couldn’t understand why they were being so cautious! The NHNN sessions are a big help – as you said I wish they were available for everyone following something like this. They definitely help with the acceptance side of things. It is lovely to hear of the progress you are still making a few years down the line – it just goes to show that there is always progress still to be made and what a long journey recovery is. Thank you for the kind wishes Gemma xx

Hi Win, Thank you for your kind wishes - I definitely now know that things can not be rushed. It has taken me a while to fully appreciate that but it is a lesson well learned and an important one on an SAH recovery, I think. I have resumed my singing in the car and around the house now that I can handle music again - it is unfortunate for my poor husband!! xxx

5 month update – Thought I would post a quick update as I am now 5 months down the line from my SAH. It is amazing the difference a couple of months can make – not just in terms of recovery - for me it is mainly the change in my perspective and understanding of what has happened to me. Generally my recovery has been good thus far. I am able to achieve some things each day and have started seeing friends and family more. Fatigue is still an issue but I am trying to learn to manage it. My main change in perspective has been in regard to returning to work. When I first posted on here I thought my return to work would be imminent. I have to say that the advice everyone gave me when I first posted on here about returning to work was definitely right – it has to be incredibly slow! I have to admit now that it is a much longer process then I ever comprehended when this first happened to me. It has taken me a long time to fully acknowledge the deficits I have been left with following this and what impact they may have on my life. I started looking into going back to work in May and went to see my GP. I was referred for more neuro-psychology tests as I did poorly on them when I left the hospital at the end of February. I sat these at the end of May and had made an improvement in all areas but still had some deficits. As a result of this I started doing the SAH recovery group at the NHNN in London, which has been very useful thus far. I saw my specialist at the start of June and they said I could potentially start back to work come September. I went to see my work’s OH last week and was told in no uncertain terms that I can’t return to work until my cognition has improved and I have done some more rehab. This was quite a shock for me as I thought I would be returning to work come September based upon what everyone else had said. Luckily for me I was referred to a brain rehabilitation charity upon leaving the hospital. I started seeing them last week and have met with an OT there who will be helping me get back to work. She has said that my work’s OH was right and that my return to work will be incredibly slow. At the moment she is planning on meeting with me over the summer holiday and then coming into work with me in September – not to teach but to see me perform a range of tasks in the work place and see how I cope. She then thinks I should be able to start a phased return after Christmas up until the summer next year. Obviously this is a very long-term and slow plan. I have to admit it is much slower than I ever anticipated, but I am starting to appreciate the recovery time after an SAH. Reading the posts people have made on here about their return to work has also made me realise what a challenge it can be and also how incredibly lucky I am to have the support of the charity in returning to work – I am not sure I could go it alone. As I have said it has taken me a long time to realise that my expectations at the start of this were not realistic and that things are going to take much longer than I originally thought. The advice on here was spot-on however! Slowly is the way forward. Gemma

Hi Greg, Yes it is all a bit of a lottery. It is only because I was already down in London that I was treated at the National, if I had been at home I guess I'd have been treated in Cambridge as that is my nearest hospital and things would be different. I think speaking to your GP about it and seeing if you can see a neuropsychologist would be a good idea. Definitely also use the BUPA if they have things like a neuropsychologist available. Funnily enough I also got some more information yesterday about some rehab - I got sent a letter off a charity based in Stowmarket, Suffolk called Icanho. They were sent my details when I came out of hospital and they have a neuropsychologist on staff. They might be worth looking up if you could get to them from where you live as they take GP referrals. I sympathise with your frustration over being able to plan and get things done. I used to plan everything and get so much done but now life has taken on a much slower pace. I am definitely having to learn to be more patient and accept the 'new me'. To be honest when I came out of hospital I thought I would be back in work by now (I think I was rather naïve and hadn't quite grasped the full extent of what had happened to me). Now I am trying to be more realistic about what I can do. I am quite nervous about returning to work as I do also wonder how standing in front of 30 children will go down now post-SAH, but I will have to give it a go! Take care, Gemma

Daffodil - yes I am looking forward to starting the group. I think it will be exhausting as I can't actually get there from where I live in Suffolk at the moment as I still can't drive and there isn't any public transport so I am going to be staying with a friend the night before and then just getting a train down to it. It will be useful to do it now before I start back at work as I imagine once I start the phased return I will be too exhausted to do much else. It has taken a couple of months of pushing to get onto any of these things, but hopefully it will be worth it. My neuropsychologist has also sent my reports to OH, so hopefully it will help work understand what issues I am left with. I am seeing OH on Thursday so it will be interesting to see what comes of that and what they recommend for work. It will be interesting to see what the fatigue management one is like - I think that fatigue will definitely be one of the main barriers to me returning to work full-time as a teacher so it will be useful to do. I will definitely report back on what it is like and what I have got from it. At the moment I am trying to take everything one day at a time and not panic too much about the future. I used to plan for everything but what I am realising now is that I can't do that as neither I nor any of my specialists have any idea what will happen. I will just have to try and return to work and see what is and what is not possible.

Hi Greg, I also had a NASAH in Jan this year and was treated at the National hospital down in London as that happened to be where I was at the time. When I was discharged back into rural Suffolk I was under the care of a local OT nurse who would come round to see how I was doing. After doing a few assessments with me she discharged me as by that point I could be left be myself in the house all day and it wasn't in her remit to do anything else. I went back to me GP at the start of May to discuss a return to work and was told that they couldn't sign me back in due to the amount of cognitive issues I left the hospital with (I am a secondary school teacher so would also be in charge of children too). She got in touch with the National hospital and I was referred to a neuropsychologist to sit a range of tests to see if I had improved at all. I sat them towards the end of May and it was the best move I could have made. The person I saw went through the tests with me and has recommended 3 types of rehab. The first is a group that meets at the National once a week for 6 weeks. All are people who have had SAH and are hoping to return to work. The next is a fatigue management rehab and the final is a vocational one. The vocational one involves a team of people who will meet with me, contact my work place to go over what has happened and the issues I am left with and also visit work if needed to see how I am doing and go over strategies to help. There is currently a 3 month waiting list for this, but I saw my specialist at the start of June and they won't sign me back into work to teach until September anyway so that should fit in OK (they specified that I could do two mornings in the last week of term before the summer holiday to go in and plan and then no more). I am quiet glad that they will contact work to discuss what has happened as I know how that I look and seem much more 'normal' despite the fact I still have memory and fatigue issues and it will also mean an outside body will be checking up on my phased return. I am going seeing my work's OH next week and will then have a meeting with work to set out my phased return for September. I would agree with what other people on here have said and that seeing a neuropsychologist would be best if you can. If you are based in Cambridge you could see if your GP could get in touch with the National hospital in London to see if you could be referred for their specialist rehab as they take people from all around London for it and will do it on the GP referral. Good luck with everything! Gemma

Sub-zero - thank you for posting. I went and read your introduction - you are right there are some similarities between what happened to me and your wife. It was nice to read about how well your wife has recovered so thank you for posting your story. Your wife has certainly been through a lot - I am glad she has made a good recovery and I hope you are enjoying your retirement together. Momo - nice to hear from you. I am really trying to move cautiously with my recovery as I don't want to do too much too soon. I have to admit that I am starting to get a bit bored being at home all the time, which I am taking as a sign I am slowely getting back to normal! I will definately do a list of questions for when I see the consultant and see what they think about returning to work. Gemma

Some excellent advice everyone so thank you - I think plenty of rest and learning to deal with the changes is key for me at the moment. Like you Clare I am not a patient person at all, but I think one of the things I need to learn from this experience is patience (that and to be less stressed!). Before all this happened I feel like I was running full-pelt on a treadmill with working full time at quite a stressful job, seeing friends/family and doing up our house. I now feel like I’ve fallen off the treadmill, but that I have time to reflect and take stock of what is important and what isn’t. And Macca I will definitely go back to work on a phased return and I think the diary is also a good idea – something I have been thinking about for a while but haven’t actually sat down and started yet!