Anne Fleming

Thanks everyone. I've decided not to go ahead with my op next week though the anaesthetic was just one of the things that led me to that decision. I wouldn't want to make anyone else worry about having an op & getting anaesthetic. I don't think I would worry too much about the effects of an anaesthetic it if I needed an emergency op for something. but I feel that I shouldn't put myself through it just now. Am relieved to have come to a decision. Best wishes Anne

Hi I had my SAH over 5 years ago. However I still have another small unruptured anni which is being monitored. I am due to go in to hospital soon for an op (not related to my head) which would require a general anaesthetic. The anaesthetist phoned me yesterday and mentioned that the risk of complications not during but after surgery (ie when I was coming round from the op) were higher because I have an anni. She did not give a % increase in risk but indicated it was small though higher than for the average person. My op would be beneficial to me but it is not urgent nor life threatening if I don't have it. I am now having second thoughts about going ahead with the op. Anyone experience something similar since their SAH? Thanks Anne X

Hello I've not been on the forum or posted for a while. It's now more than 5 years since my SAH. However I still get really tired if I overdo things at all. I'm an awful lot better than during my first couple of years & feel I've kept on improving slowly over the years but still feel I've not got back my stamina. I've given up mentioning it to people as it's now so long since my SAH and it seems as if I've been moaning about being tired forever. Does anyone who had their SAH a while back think that the fatigue element ever goes away? I'd be interested to hear. Also a big thank you again to Karen for all her work on setting up the forum - if it hadn't been for BTG, I don't know how I would have got through coping with the frightening symptoms I was left with after my SAH and managing to come to terms with what had happened to me. Anne X

Hi MaryB I noticed exactly the same symptoms as you after my SAH - I found it hard to know where noise was coming from and thought I couldn't hear so clearly. I also had constant ringing in my right ear. I had my hearing tested and it turned out I had lost quite a lot of hearing in my right ear (my SAH was on the right side of my head) and apparently if both ears aren't working well this results in it being more difficult to make out where sounds are coming from. In time I got used to it and better at judging the direction sound was coming from. The hearing specialist diagnosed senso-neural hearing loss which means that it is difficult to separate sounds and so background noise can make hearing difficult. It's more than 4 years since my SAH and I have got sort of used to my hearing loss. I also have a hearing aid for that ear though I don't wear it all the time & in fact even the hearing specialist isn't sure it makes any difference. I think it may be worth you having your hearing tested. The hearing specialist also looked at the physical structure of my ear to make sure nothing was damaged that could be put right though in my case it was all fine. best wishes Anne

Hi Mary I was exactly the same. For the first year my diet consisted mainly of bland food - porridge, ice cream, plain yoghurt, mashed potato, milk. Even now these foods are still my favourite. It's almost like being a child again and having to get used to stronger flavours. For me the worst taste is still vegetables which have been roasted and leeks, as I can taste the sulphur. I'm a vegetarian so when my taste was at its worse, the range of foods I could eat was very limited. After my SAH I really wanted to look after myself and eat well etc, so I was really distressed to be on this very repetitive regime though my GP reassured me and said that it wouldn't do me any harm and to take a vitamin and mineral tablet (which she wouldn't normally recommend patients to do) and she also provided me with bland tasting drinks to provide nourishment and calories. I would be hopeful that yours will improve though it may take quite a long time. I think the nerves linked to our taste have been injured and this seems to take a long time to repair. If they are completely severed, I think people can lose their sense of taste altogether. Best wishes Anne

Dear Mary Yes I had a lot of taste problems after my SAH. Of all my after effects it's probably the one which upset me the most. For at least a year most things tasted like sewage/rotten eggs or mould, depending on what the food was. I lost a lot of weight and it really got me down too. 2 years post SAH I was faring a bit better. With me, everything tasted too strong, processed food was very metalic tasting, my sense of smell was also very strong. My GP, neurologist, a dietician I was referred to, all knew little about taste problems and even on Behind the Gray, not a lot of people seemed to have this type of problem, or at least not to the extent I did and so I found it a very isolating problem to have. I have written about it quite a lot on Behind the Gray already. Now 4 years on it has improved enough for me to enjoy food and also I have got used to things tasting differently. I'm not sure how bad yours is but feel free to PM me as if it would be helpful, I can go in to more detail on how I coped with it. With best wishes Anne

Hi everyone Just wanted to post on my 4th anni-versary. It's taken me all this time to more or less accept the "new" me following my SAH, well, a mixture of acceptance and of the after effects of my SAH improving very slowly over the years. For anyone in the early months and years of recovery, I think there is hope that recovery can be ongoing and doesn't stop after 6 months or 2 years, or whatever the time scale a doctor quotes. My sense of taste was very badly distorted following my SAH (most food tasted like sewage, I smelled random phantom bad smells and the whole thing really got me down) but it has gradually kept on improving and this summer I was able to eat and enjoy strawberries for the first time in a few years. (I loved them before my SAH but after they had a sewage taste). As a result I spent £s on punnets of them. I know it's a small thing but it was important for me. My hearing was quite badly affected and though it hasn't improved, I have got used to it more and now have a hearing aid which I put in when I want to make sure I hear what's going on. I was despairing after my SAH and just wished I had known then that I would be as well as I am today, 4 years later. Warm wishes Anne x

Hi I'm coming up to my 4th anni-versary. It falls just after my birthday. I think the longer it is since the day it ruptured, it feels stranger celebrating surviving it with family and friends. However for me it's a very special day and one on which I feel both a bit nervous and also particularly grateful to be alive. Around the time of my anni-versary I buy myself a piece of jewellery (not expensive). Last year I got a silver ring and have worn it nearly every day since and the year before it was a pair of earrings. Every time I wear a piece of my "surviving the anni" jewellery, it always reminds me to make the most of that day. I'm hoping to end up with a big box of the stuff! Love Anne x

Hi There's an interesting article about AVM in Daily Record today. I noticed it on the front page in newsagent this morning and have just read it online. Unfortunately I don't seem able to open 2 sites at once on my computer so am unable to insert the link. However it's in today's Daily Record. best wishes Anne

Hi I wasn't sure whether to post this thread or not as I don't want to alarm anyone when they're no need though at the same time it's good to share information. My GP is sending me for an ultra sound to check for an aortic aneurysm. There is apparently a general screening programme being introduced by the NHS (I think it's for high risk groups such as men 65 and over) but my GP decided to send me as there is a history of both subarachnoid and aortic aneurysms in the family though no one's had both. I have no symptoms of an aortic aneurysm and haven't been worried about having one. I'm also not aware of a connection between a subarachnoid and an aortic anni and my GP hasn't suggested there is. I'm just posting this as I feel it's important to discuss family history with your GP. Warm wishes Anne

Hi Leonie - I'll be interested to hear if you are offered the option of coiling for your 2mm one. It's only quite recently that the new smaller coils have become available. I hadn't really thought before (probably naively) that an op on an aneurysm would be offered in some parts of the country and not in others. I know it happens with drugs and aftercare services. Jan - hope our op goes well. If my surgeon had been more encouraging, I would have had my little unburst one coiled as well but he seemed quite reluctant so I've not gone ahead, for now at least. Warm wishes Anne x

Hi I was interested to read this thread as I just had a neck and shoulder deep tissue massage at the weekend. On the day I had my SAH, I had a sore right side of neck. At night my aneurysm ruptured. Since my SAH the muscle on the right side of my neck is periodically sore and this gives me headaches. My GP doesn't think my sore neck is related to my SAH but thinks it's tension and at the time my neurologist didn't know for sure. I have booked a further 2 deep tissue massages to try to relieve the tension in my shoulders and neck but now am a bit concerned. Nothing seems safe any more! Love Anne x

Dear Winter The other day I was reading about a depression sufferer who started a web site to help others. It's called Depression Can Be Fun. You may already know it. Warm wishes Anne

Thanks for all your replies. I'm starting to feel "normal" again. I think it must have been exhaustion which caused the disorientation and I'll have to allow for more time to recover in future. I still find it hard to factor in the fact I get tired more easily. I must admit I didn't venture out of Edinburgh until about 9 months after my SAH (and even then, only the length of Glasgow on the train) and it took me about 18 months before I plucked up the courage to fly over to see family in Belfast. Warm wishes Anne

Hi This is a bit of a weird question but I know it's ok to ask anything on this forum! Since my SAH I've been abroad on holiday twice and have been fine when I've been there but on coming home I've felt awful for a good few days - a feeling of general disorientation, anxiety, unsteadiness and overwhelming fatigue and have had to spend one or two days in bed. My holidays were not too far - only France first time and Morocco second time so it can't really be jetlag. I've never had this before after holidays only since my SAH. It's quite a horrible feeling. Has anyone else experienced it? Sorry if this is a silly question! With best wishes Anne x

Hi Surfer I had a MRI with contrast just before Christmas. From what I remember it was a shot in my arm (I actually think it was on the back of my hand in my case as it's hard to see the veins in my arms ) before I went into the MRI room. Once I got into the scanner I kept my eyes shut all the time and didn't really get any strange sensations. I remember with my angiogram the dye seemed a lot more invasive in that I saw flashing lights etc but I had no funny sensations with the MRI. I think you'll do ok. The only thing which phased me slightly was that I had brought a CD with me to listen to while in the scanner and when I got there the CD player was broken so I went in without any music. That unsettled me as I was looking forward to relaxing more with music on but that passed. Hope it goes well. Best wishes Anne

Hi John I think the fact you remember all these dreams may be because you are not sleeping very deeply. I remember once having a time like that and I think my GP put it down to the medication I was on at the time (I can't remember what it was) but she changed it, and the dreams seemed to diminish quite a bit. After my SAH I also experienced seeing "images" when I woke up out of sleep. One time I remember seeing a man sitting by my bed reading a newspaper and it took me a few seconds to realise it wasn't real. Other times I would see spiders or large shadows moving about. Again my GP was helpful and I think "visual hallucinations" are not uncommon when waking out of sleep. Again she changed medication I was on and though I still see "images" from time to time, I have learnt to ignore them. It might be an idea to discuss your sleep with your GP. I hope you get something sorted. With best wishes Anne

Hi Lin-lin I'm glad you're enjoying your work. CAB sounds very interesting and I know the Shaw Trust from my old job as I used to have dealings with them and they seemed to be a great organisation with a very sensible ethos. Warm wishes Anne x

Hi Harry Welcome to BTG. It's been 3 years since my SAH. Back when I was in my early days of recovery, like you are now, I remember feeling very frustrated because I wanted to know if I would ever be 100% back to normal and no one (including the consultants) could tell me. Each case seems to be unique. For me I would say some of my symptoms (mainly tiredness, lack of awareness in right visual field and severely distorted taste and smell) did improve over time but this happened extremely slowly. I also lost quite a lot of hearing in my right ear but this did not improve; this was due to a vasospasm rather then the initial aneurysm rupture. What has happened is that I have slowly come to terms with the differences in myself and incorporated them in to my life. Recovering from a SAH seems a rollercoster of emotions - immediately after it I was elated to be alive, next stage I was wondering if I would get completely better (a lot of anxiety), next stage was realising that I might not (grief) and then finally accepting the new me. I started back to work after 6 months and this was SO difficult. I was on a phased return and had to spend 48 hours in bed after my first 3 hour shift. It took me about a year to get a reasonable level of energy back. I'm now working full-time, go out 4 nights a week on average but don't quite have the stamina I used to have and get tired more easily but reckon I'm doing pretty well. Sorry I'm rambling on but I suppose I would say - yes improvement will definitely take place but it could be slow. Also you'll grow to accept the new you but there may be difficult stages to get through before you reach that point. Look forward to hearing more from you on BTG. Best wishes Anne

Hi Jan Yes it's a tricky decision. I'm in the same position as I have another small aneurysm. Last year I was told it was too small for them to operate on it but this year when I had my MRI, I was told that although it was no bigger, they now had smaller coils and so would be able to operate on it. Apparently they give you odds which are personal to what your circumstances are and mine are 1 in 200 chance per year of it bursting and if I had the op, a 7-10% of it resulting in death or stroke. The risk is high as it is a very small aneurysm which is apparently harder to coil and it's also in a tricky place. I've decided not to do anything for now and just to have it monitored and I'll have another scan in 2 years time. I think in your case, the odds seem much more favourable. so I can see how you are more inclined to consider having the op. It was obvious that my consultant could only present the fact/statistics to me and would not advise me what to do. However I got the feeling that he was happy with my decision to leave it. Do you get a feeling from your consultant as to what would be best for you to do? Warm wishes Anne

My SAH happened when I was on the loo.:redface: I was nervous about going to the loo for a while after it. Anne x

Hi Vicky Welcome to the site. I've not really had sinusitis since my SAH but for about 20 years before it I was plagued with it constantly - sore head, ears, throat and the whole area would be infected and I would cough up horrible phlegm and needed antibiotics on a regular basis. I even had an op about 15 years ago to straighten my septum and open and close various sinuses. I thought I was stuck with it for life but it miraculously disappeared following my SAH. Both my GP and my neurologist have said that there was definitely no connection with my SAH though I'm not convinced! It is a very difficult thing to get shot off - mine seemed to be there all the time but at times got worse and I needed antibiotics about 6 times/year. Glad to hear you're doing so well overall after your SAH. Warm wishes Anne

Hi Nick Really glad to hear you're doing well. Yes making friends in a new place takes time but be patient, it will fall into place. Best wishes Anne

Hi Amelia I'm so sorry to hear about your loss of your mum. I lost my mum too though she was 78 when she had a SAH. My maternal grandmother also died from a SAH when she was in her mid 40s and I had a SAH when I was 44. My mum lived in Northern Ireland and I live in Edinburgh so I have a different GP who doesn't know my family and their background so neither of us made the connection prior to my taking ill. I don't mean to worry you with my email as the chances of having a hereditary aneurysm seem to be very remote. I think tho if there is anything positive to be got from your experience, it's that you are being sent to a neurologist who'll be able to reassure you. Let us know how you get on. With warm wishes Anne x

Hi I was just wondering if anyone has been given advice on keeping well post-SAH, especially if you have a second aneurysm which hasn't been treated? I was told not to go deep sea diving post SAH (unlikely that I would have considered it, in first place!) and advised not to smoke and have raised blood pressure. Apart from that, nothing else. I would still avoid any type of strenous exercise like lifting weights and I didn't go on a spa day with friends as was a bit worried about sauna and steam room (though don't know why). I was just curious if anyone else had advice or avoided doing things now? Warm wishes Anne