Liz D

Hi I had my first angio through my right side on the Monday, the coiling procedure on the Wednesday, again through my right side and this operation took 8 hours. My 12 month angio was also done through my right side. During the follow up angio he was talking me through what he was checking, there were 6 screens. He also checked my heart and the vessells around it. Maybe you should contact your surgeon's secretary and she might be able to give you an answer. Take care.

Wising you all a merry Christmas and a happy and healthy new year! Thank you to Karen and the rest of the BTG team for all your hard work throughout 2010! xx

Hi goldfishgirl I've gone through the same as you and I work for the NHS! My previous manager was a trained psychiatric nurse, who at my return to work meeting told me that she knew well how people look fine on the outside but that it's all going on in the inside! My return was being overseen by occupational health and she completey ignored their advice and even had a tantrum in the office when she heard my phased return could take up to 6 months. She and the office manager put me under intolerable pressure, I believe they hoped that i would resign. My office manager even sat a laughed at me one morning when she saw the size of the font on my computer, I needed it to be very large for it to be comfortable to read the screen. After being back at work for 11 weeks, my GP signed me off sick. The doctor at occupational health also agreed that I should be off as I was showing symptoms of severe stress. This was back in February of this year. This is when I involved my union, Unison. My first contact was with a local rep, who worked in the same hospital but she said that it was beyond her experience and it was passed on to the senior paid official from Edinburgh. He has been fighting on my behalf, and he has had to fight! I put in an official complaint, my treatment goes against the Trust's Diginity at Work Policy, which our HR department pays very little attention to. In fact the HR manager and my then manager arranged to meet the occy health doc and wanted him to agree that I was cognitively impared and no longer able to work. This happened in April. He told them that if they continued with this then things would end up at a tribunal and that in his opinion I had no cognitive imparement! As a result of this I was put on the Redeployment Register, as the OH doc said that it would be detrimental to my recovery to go back to that office. The Trust have only started to investigate my complaint 3 weeks ago! I have now been redeployed into a wonderful office with fantastic and supportive colleagues. I couldn't be happier but needed the support of my Union and the occupational health doctor. My current line manager, a consultant clinical psychologist, told me yesterday that he would be very happy to write a letter, pointing out my abilities and how hard a worker I am! However, this process was very stressful and many a time I wanted to just give up! I was signed off work for 4 months due to stress. But the "old me" kicked in and I refused to give up. If you have the strength, fight them. If your local union rep doesn't have the knowledge or experience then ask for it to be sent up the line to a fulltime paid offical. My HR department cannot contact me about this case, they have to speak to my union rep, everthing has to go through him. You will start to feel stronger after being away from work for a bit. I think I was about 6 weeks into my sick leave before I started to feel better. Sorry for the length of this post, I got on my soap box a bit there!

Congratulations John on your first anniversary and becoming a grandfather. She's beautiful. I wish you well for your second year!

Hi Tina60 Well done you on getting back to work to quickly but do rest as much as possible. I had my anni coiled Feb 2009 and was told in July 2009 that I would be checked once a year for 5 years. I had my artery coiled as well as the aneurysm. I had a follow up angiogram in Feb this year and it showed no leakage. I saw my consultant in July and he made the decision to dishcarge me because the artery had shrivelled, so the procedure was successful. He told me that they would have been following me more for their information rather than for me. My case was very unusual and that was why they wanted to keep data, but there was researcher there who had my permission to copy my notes and scans on the condition that I was not contacted. He also said that it was too stressful for me to keep coming back and that i should be left to get on with my life. Every case is different and so is what ever follow up is required and the consultant will make that decision. I am very happy not to have to go back for more tests!

Hi Karen My paternal grandfather died from a SAH when he was 63. My cousin (from that side of the famliy)had a SAH in 2008 at the age of 62. Her sister died from a SAH in June 2009 aged 52 and I had my SAH when I was 49. At the time of mine I had no idea about the others because I don't really know my dad's family. But I did a bit of digging to try and make sense of why I'd had one. I didn't fit any of the usual triggers. I have 3 sister and 2 brothers. 2 of my sisters have requested that they be checked and that's being processed. The others don't want to be checked at the moment. I discussed this family link with my consultant in July and he told me about the "2 first degree relatives", cousins are 2nd degree relatives. So I asked him did he think that it was a coincidence that my family members had SAH's and he replied no! But he did advise that I should discuss it with my 3 children and that it would be advisable for them to be checked. I have done and all 3 want to be scanned once they reach 30. My surviving cousin lives in Canada and has a 45 year old daughter who has been scanned twice and will be continually scanned every 3 years (if she wishes). On hearing about our grandfather the Canandian docs said there was a link! That was before me and her sister had had SAH's! I keep an eye on my youngest son. He has the same kind of headaches that I was plagued by throught out my life, as had my two cousins, I now know. But I no longer get those kind of headaches! My consultant believes that my anni was caused by a fault in the make up of the artery. My artery had a bend in it, when it should have been straight, and the anni was dissecting it on tip of this bend. He thinks that maybe the anni developed after the SAH, caused by an arterial dissection, I had when I was 37 (I thought my migraines had just moved up a notch)He told me that this flaw could be present in another artery or maybe not, no way of knowing unless I start to develop another anni. This is why they keep my blood pressure just below "normal" and that alcohol is a no no for me and I have also been told to stay away from cigarette smoke! What a very interesting thread Karen, thank you.

Hi Sonia Because I work for the NHS I got occupational sick pay. I recieved my full pay for 2 months and then half pay for a further two months. I had worked for them for two years. Had I been working there for 5 years I would have got 6 months full pay and 6 months half pay. It all depends on your terms and conditions where you work. Once my occupational sick pay ran out, I then went on to statutory sick pay, you recieve that for 28 weeks. the 28 weeks starts from the first day of sickeness but you can't receive occupational sick pay and SSP at the same time. But after the 28 weeks were up I received nothing. Incapacity benefit is means tested and our income is above the thresh hold.

Hi Kel I think you should take them up on that offer and ask them why NHS 24 in Scotland ask the question about a headache and the operators in England don't! NHS 24 has offices in Glasgow and the neuro services in Glasgow have just recently been expanded and it was input from this department that brought about this question. It's a simple question but the answer, dealt with properly, can save lives! I had a CT scan in our local hospital straight away and they were looking for a bleed but they couldn't see anything, so I had to wait until the next day and was given a lumbar puncture and the fluid was full of blood. That's when everything moved very quickly and I was transferred to Edinburgh. However, the consultant neuroradiologist saw the bleed on the scan and I had had 2 large bleeds. So we are also at the mercy of the experience of the person looking at our scans!

Hi Stu Welcome to BTG and good luck for 26th. I shall be in celebrating my 25th wedding anniversary that day, we're going to the Grand Hotel in Brighton for a week(I used to live in Worthing), so I shall be thinking about you and wishing you all the best. I am the 4th member of my family to have a ruptured aneurysm. My grand father and cousin died but my other cousin survived. I have 3 sisters and 2 brothers. 2 of my sisters are going to be checked but the others don't want to be. My consultant advised me to speak with my children and they do want to be checked but they don't scan anyone with a family risk until they are 30. They are 24, 22 and 19, so they have a bit of time to wait. My case was rare too, my consultant had said that he has only seen arterial damage like mine in road traffic accidents! My case was descirbed as "very interesting" and the operating theatre was full to bursting! I was awake for the first 2 hours and was also aware of my "audience". But it all went very well for me, as I'm sure it will be for you. As for when you come home, lots and lots of rest!

Hi John I have the same problem but I tell people straight away that I have a difficulty in remembering names. When I started working in the office I am in now I explained this to them. but they saw me in action lol! We have a lot psychologists coming and going. There are about 12 that work a few hours each week from here. It has taken me 3 months to get their names, sort of right. But I also have problems if I meet someone outwith where I would normally see them. I met one of my work colleagues (I work with her everyday) two weeks ago in the supermarket and couldn't remember her name. Again I had warned them that this could happen. I introduced my husband to her and then blank! She laughed and said she could see the panic on my face! I spoke to my consultant about this when I saw him in July. He said it's connected to the concentration part. He said I'm not concentrating fully at their face and the name both at the same time, and also because I know I have this problem there's an element of anxiety too. Sorry I'm not explaining this well but it made sense to me when he talked about it! I can't do the association thing either, too much information to try and hold on to! So I just have to keep apologising to people and tell them that I've forgotten their name!

Hi Kelvz48 Welcome to BTG. I wish I had found this site much earlier in my recovery, I was 8 months post SAH when I found it, as it has been such a godsend and the people on here have helped me through some tough times. Take your time returning to work. I was 10 months into recovery when I went back to work on a phased return. My occupational health doctor said it could take up to 6 months to return to 35 hours per week. I was to start off with 6 hours over two days and work up from there. I had an unsympathetic manager and I was signed off again 11 weeks later. I then returned to work again, 4 months later, straight into a 35 hour week and coped with fine. I now think I returned too early the first time. Other members on here had written about how the first year is all about recovery and I think they've got it spot on. Since my first anniversary in February this year, I have gone from strength to strength and now 19 months post SAH feel "normal". I do have some problems with memory etc but so do a lot of people my age! I now work in the admin office for our psychological services and some of the psychologists were very surprised to hear about the SAH and stroke. They've said that it is not obvious that I have had brain injury but if they had met me earlier on in the year, it would have been very obvious then!! We all recover at our own pace and take different lengths of time to get there. You are very early in your recovery and are doing amazingly well! But be kind to yourself and don't put too much pressure on you. Take care.

In Scotland the NHS 24 operators are trained to ask certain questions no matter what the person's ccomplaint is and one of those questions is "do you have a headache" and if the answer is yes it's followed by "did it come on suddenly". When my husband called NHS 24 and answered yes to these questions he was transferred to a nurse (who asked further questions and tried to speak with me) who told him what she suspected was wrong with me. She then called an ambulance and phoned ahead to the A&E department, warning them that a suspected SAH patient was on her way. I was quickly booked in and then transferred to a medical ward. The doctor (who was a colleague, I was a secretary at the same hospital) who attended to me did some checks and then told me that I was very sick. He called Edinburgh Western's Neuro department for advice. He was told to start treatment for a SAH (ie medications and drips), their advice is to carry out treatment for SAH if that's what's susupected rather than wait for a definit diagnosis. That call handler at NHS 24 helped save my life as this was my second bleed and my aneurysm was dissecting the artery. My daughter works in the HR department of NHS 24 and never really understood why asking about a headache was included in their training, now she does! I know I was very lucky, especially after what some people on this site had to go through before they were diagnosed. I'ts that simple question "did it come on suddenly" that should ring alarm bells with any doctor!

Hi Jan Thank goodness for the CAB! I've no idea what company you work for but my sister worked for a private firm and she had access to legal advice through some scheme that they ran. But it also covered family members. My husband is a civil servant and they have access to all sorts of legal advice (not civil service lawyers) and other services but it also covers family members. My youngest son got counselling through it when he was struggling to deal with what happened to me. So maybe it would be good for you to investigate what your company offers you, you need someone to be looking at things from your side! I know what it's like to have to deal with an unsympathetic manager, do you think if it were a member of their own family going through this, they would be so horrible! I hope when the tabs start to kick in that they help, take care.

Hi Pamela You are still vey early in your recovery. I had my SAH February 2009 and was in hospital for two weeks. The day of the aneurysm's rupture was very cold and frosty and then I had a sequential bleed 4 days later. When I came out of hospital I was too scared to go outside because it was cold. I would stand behind the back door to let the dog out into the garden! But I was still sleeping for most of the day too then. My GP did say to me that I would have to make myself go out but I knew I didn't have enough energy, at that point, to do it. So it was about the end of April early May before I ventured out and that was only to go out of my backdoor and stand in the garden! But that was a start and I would do that everyday, then it was a walk to the end of the road and then a walk down to the shop. Be kind and patient with yourself and set yourself small targets at first, something that you know you can do and slowly build up your confidence. I also had anxiety attacks in the early days. I had to sleep with the light on, in the spare room because I was not only disturbing my husband's sleep but he was getting anxious when I would wake up, very upset, thinking that it was happening again! But again with time these got less and less. Remember you have been through a major trauma and maybe it would help to speak with a counsellor. It was my counsellor who told me that it was post traumatic stress that I was dealing with and that sort of put things into perspective for me and I put less pressure on myself. I hope this helps a little, take care.

Hi Jan Are you a member of a union? I had a very similar experience to you (I work for the NHS!) when I returned to work last December, 9 months post SAH. My return was being overseen by Occupational Health and the doctor envisaged my return to take up to 6months. I was to start on 6 hours per week, over 2 days and not to be consecutive. this for the first month. I was to start with taking on a few duties, consolidating this before taking on more. However, my manager had other ideas! She ignored the advice from OH and was demanding that I return to 35hours per week, (even though one of his reports stated that she may be in breach of DDA!) full duties and full shift pattern by the end of 12 weeks. She put me under huge pressure and after being back at work for 11 weeks I was signed off with work related stress and it took me 4 months to recover. The OH doctor would not let me return to work in that office and my manager and office supervisor are the subject of a grievance enquiry. I couldn't have got through all this without the support of my union official. He came with me to all meetings, spoke on my behalf and his advice has been invaluable. Unfortunately we are at the mercy of our supervisor's personality. If they are supportive and have empathy then a return to work is just the best thing! I have now returned to work and worked in the admin office of our psychological services department on a temporary contract. The head of service has worked hard and managed to get me kept on here permanently because he has seen in me a hard worker who is very capable! I have had tremendous support from my admin collegues and my confidence is slowly coming back. Some of the psychologists, who didn't know of my illness, were actually surprised and have said they would have had no idea that I have had a brain injury! LanaH it is so good to have an HR person to advise. I have had to fight my own HR department who, with my manager, have tried to get the OH doctor to agree that I was incapable. He told me this himself and also told me that he had advised them that if they continued down this road then they would be looking at a tribunal. They wanted me sent for psychological testing, he also advised them that they would have to be able to justify the cost, of approx £1200, because he couldn't! He actually told me that I would probably have enjoyed it because it would show me just how capable I am! I reallly would urge you to think about joining a Union, you can join online and as soon as the first payment leaves your account then you are covered. Remember that some people rely on their staff's ignorance in employment law! Also, if you were already back at work and doing some duties why can you not return to them?!

Hi Sonia You shouldn't need a letter to say you're fit to fly. Of the many questions I asked before I was discharged, one was about flying. I asked if the coils would beep and he laughed and said no! I also asked about restrictions on flying and he said as soon as I felt up to it then fine. I've flown several times, although always within the UK. But you will have to declare it to any insurers and I think there is a post somewhere on here where travel insurance was discussed and the names of companies that would supply us with insurance. Sorry but I'm about to go out and can't troll through the posts but there is a discussion about somewher on here! Hope this helps a little.

Hi Teri Welcome to BTG. What a time you and Derek have been through but lovely to hear how positive you are. It is sad how we leave hospital with no information about lies ahead. I was 8 months into my recovery when I found this site and what a relief it was. I really needed to hear from people that had been through it and although I was told of a support group, it was in Edinburgh, 35 miles away from me. I had dreadful motion sickness, so that was a non starter! Although we all recover at our own pace, we do have a lot shared emotions. But our recovery is made all the easier with the support of our families. Everyone kept saying to me that it must have been a very frightening experience for me but it way much scarier for my famlily. My husband, 3 children and brothers and sisters were all amazing during my initial recovery. Maybe you should visit your local citizens advice centre. They will help you with information on what help you should be entitled to. It's such a shame that with all that the two of you have been through you will still have to shout and fight for the help that you're due! Take care.

Hi Noah Congratulations on your first anniversary and I hope you had a good and positive day. My SAH happened outside of a restaurant on 14 February as we were about to celebrate my birthday, which was the previous day. On my first anniversary I was due to have an angiogram, so was in no fit state to celebrate at all, so it's always going to be mixed feeling at everybirthday. I still can't go into Melrose (the next town to ours) for a meal after dark, I get too stressed because the memories keep coming back, so well done to you if you did visit to where it happened, I'm sure you will have laid some ghosts to rest. I think it's a lovely idea to celebrate and mark it with a gift.

Hi Stace Welcome to BTG. I'm so sorry to hear about your Dad, that must have been an awful shock. I had a SAH in February 2009 and in October the same year, my eldest son's best friend lost his mother to a massive SAH. They had just come through their front door, after returning from a holiday, when she collapsed and was unconscious. The family are still trying to make sense of everything. His dad has questioned my husband at length about my SAH and it seems to have helped them understand things a little better. Take care.

Hi Kimmy Thank you for sharing your story. I'm like Sally, I get inspiration from survivors who are further along than me and congratulations on being 15 years post SAH! I have managed to get back to work but cannot imagine being able to do white water rafting!! (I'm so impressed). Glad too that you had a good time on Saturday, sounds as though it was a really good day.

Hi Marlyn If your mum has never had the opportunity to talk with someone who's gone through this, then it can be a lonely place. I found this site 8 months after my SAH and the feelings of relief were huge! I actually felt "normal" for once! It's such a pity that we leave hospital with very little information on the recovery ahead. Maybe you just have to bite the bullet and tell her you are worried about her and think it might help her to speak with someone. Some people view counselling as a sort of weakness but it takes a strong person to ask for help. You can get counselling through your GP. In Scotland you are entitled to get 6 sessions with a counsellor hrough the NHS. If she's resistant to the idea of counselling then maybe you could contact someone on the Brain and Spine Foundation's helpline to give you advice. They have a website www.brainandspine.org.uk and helpline is manned by qualified nurses or you could contact them by email. I hope this helps a little.

Hi Jo Welcome to the site, glad that things are improving for you. Is that Georgia, USA you are from.

Hi Donna I had my follow up angio at 12 months. But I had my vertebral arery coiled as well as the aneurysm. It really depends on the treatment you reiceived, I think, I don't believe it's a post code lottery. I think most people who don't need a follow up angio have been clipped. I was really nervous and I mean really nervous! But it wasn't nearly as bad as I had thought. Actually the worst bit was being back in the hospital and having to deal with memeories that had been forgotten! But I don't need to have anymore angios or appointments as my artery has shrivelled, so it was well worth it! I was supposed to have a follow up outpatient appointment at 12 weeks post SAH but it turned out to be 20 weeks post SAH! But I work in a hospital and know how a thing like annual leave can cause havoc with appointments! Try not to get too stressed and all the best for Thursday. Take care

Hi Erin You are doing amazingly well typing one handed! At 3 months post SAH I couldn't even sit at the computer wihout getting a headache, it took me to 5 months post SAH to this and another 3 monhs jus to find this site! I suffered paralysis of my left shoulder and arm during the coiling procedure. I was awake for the first 2 hours and asleep for the remaining 6. I was told the next day hat they had no idea what caused the paralysis but at my appointment in July this year I was told i was a brain stem stroke. At home I couldn't open doors with my left hand (I'm left handed), I was like a blind person trying to grab the door handle, my arm was all over the place! I dropped everything with that hand and my arm would judder out of control! But I was told to keep trying to do the things that I couldn't or had difficulty doing. Then I had 4 months of physio to try and build up the muscles in my shoulder. One excersise - on the floor on all fours, lift my right arm and take the weight on my left and I would fall over in pain! The messages from my brain go lost somewhere! But by repeaing things over and over again, my brain relearned the route for the messages. Although I can now sort of do this excersise and I still cannot lift my right arm and left leg at the same time, it's too confusing for my brain! That's the best advice I can offer, keep doing the excersises they give you and let time be the best healer. You've been through such a lot and are still very early in your recovery yet you are dong so well!

Hi Zoe Don't feel guilty, you have talk about how you feel and most of all you have to be honest! You are in a very stressful situation. We'd been very happily married for 23 years when I had my SAH and it put a huge strain on our marriage. My husband's lost the strong, sociable, full of energy and very organised wife he relied on. Our lives changed a great deal. We eventually needed some couple counselling to get us through the worst and now things are better than they've ever been. But my SAH was no where near as devastating as Richard's and our children were 22, 20 and 17 when it happened. You have done amazingly well to keep it together as much as you have done but as Louise said, make time for your self. Take care.