steph

Hi Scarlett, I really feel for you but try and take a day at a time. It's completely natural to feel anxious and wonder what is going on. I would go back to my GP and explain how anxious you are getting waiting for angio. I'm sure they can help but in my experience it always helps to take someone with you, a partner, friend or parent to support you. Write down all your concerns as it is easy to forget once you get there. As for contrast dye, I have asthma and had no problems. I'm sure you can ask for sedation eg valium but I didn't have any and coped. Sure you will too. Take care love Steph x

Hi Scarlett, Wanted to put your mind at rest....hopefully. I had a SAH in Sept 2009 when a 12mm aneurysm on my opthalmic artery ruptured. I had it coiled and when it was followed up 6 months later the MRI was not clear due to stent they put in artery to hold coils in. I had an angiogram that clearly showed I needed more coils. This was done successfully in 2011, I went back yesterday for a follow up angio and all has stayed in place and they are happy with me!! Angiography sounds scary but remember the image it produces a very clear leaving no room for uncertainty. You lay flat and they put a local anaesthetic in groin, they thread a catheter up to your neck ( you don't feel it) You lay still while a contrast dye is put through catheter whilst they take image of area. You may have flashing lights with it but no pain. After angio you lay flat for a couple of hours and are mobile after about 4. Trust me I'm a real chicken and if I can do it anyone can! It is far better for you to have aneurysm coiled to stop you worrying, when I woke up after last coiling I had no after effects and was up and about in no time. Happy to answer any questions on angio etc Sending you lots of love Steph X

Hi Olef, I had my aneurysm coiled following a SAH in Sept 2009. At my 6 month follow up I was told the same thing as you, the coils had settled and they wanted to top it up. I have a wide necked aneurysm and they needed to insert a stent in the artery to hold the coils in after initial bleed. After an initial failed attempt they finally managed to fill it up a year later. I had no problems post op. I think those of us who have had a SAH are left traumatised, I remember nothing of my haemorrhage. One minute I was eating lunch and the next thing I remember was waking up in ITU 10 days later. I have recovered well but not returned to work. Consequently when we return to hospital for checks it brings it all back. I am due to have an angiogram soon to monitor coiling and another small aneurysm on same artery. You will be fine, its such a comfort knowing we can help each other. With love Steph

Hi Alison, Great news to hear Chris has improved so much in such a short time. Don't worry about unusual behaviour, it is very common after such a trauma to the brain. I remember being convinced the nurses and doctors on ICU were training for Strictly Come Dancing. I asked one of them how they had the time while looking after the patients. She just smiled and said they were great at multi tasking! Loads of love to you both, keep smiling. Steph xxx;-)

Hi Alison, I have been following your story closely. I like Chris had a SAH in Sept 2009 and was taken to St Georges where I spent a month following coiling of a ruptured aneurusm. Don't remember much of it but like Chris I had my hands wrapped up because I kept fiddling with my nasal tube. According to my husband and 3 sons I was a right pain! Like you, I was a learning support assistant before the SAH so we seem to have a lot in comnmon. I live in Littlehampton in West Sussex so I know what a pain travelling up to Tooting is, but it is an excellent hospital and I was well looked after. Keep positive, miracles really do happen. My chances of recovery were not good early on but here I am 2 years on and doing well. I have found this site such a great support although I don't post on it often. Headway is also an excellent support group where you can go and meet up with other carers and people who have had various brain injuries, I think there is a group in Crawley. Take care of yourself, I am sending you both loads of love. I will remember Chris in my prayers tonight. Steph xxx

Thanks everyone, I always feel better knowing there are people who know exactly how you feel. Will keep you all updated on dates etc xxx

Hi everyone, Had my SAH in Sept 09 and during my follow up mri was told I would need more coils in aneurysm. Had angio to confirm this was best option and in Nov last year went in for procedure. As you are all aware it is so easy to get yourself worked up about having more surgery...anyway when I came round in ITU the consultant informed me that he was not able to put more coils in as the stent that was supposed to be under aneurysm wasn't completely covering it and coils kept coming out. I had to go back yesterday and he has been talking to other neurologists and the firm who manufactured stent and he wants to put another stent in. He said he has never come across this before (bl**dy marvellous!) You are fed all the risks etc which seem small in comparison to how bad things were when it happened but I didn't want to be told I was 'one in a million' Has anybody heard of similar cases, it all feels a bit overwhelming at the moment. Thanks for being out there...you are all a great help x

Hi everyone, I suffered my SAH in Sept 2009, it was due to a ruptured aneurysm on my right opthalmic artery. It was coiled and when I 'came round' a week later I found I had very impaired vision in my left eye. After much moaning on my part (consultant didn't seem concerned) I was reffered to the opthalmologist who diagnosed 'Tersons syndrome' a haemorrhage behind eye at same time as an SAH. Over the last year it has improved slowly but in last couple of weeks I have had visual disturbance like a migraine and am not seeing opthalmic consultant til Sept 10th. I am also waiting for a date to 'top up' coils as angio showed they had settled in aneurysm. I feel really low at the moment it's like you have this major life changing event and then you are virtually left to get on with it. I would be so grateful to hear from anyone who has had visual problems following their SAH. Thanks Steph x

Hi everyone, I had my SAH in September last year and it was coiled. After my follow up mri in March I was told I needed an angiogram as it appeared the aneurysm had 'reformed' I freaked out until it was properly explained that coils can settle and need topping up. Like many of you I have a neck in the aneurysm that the consultant feels should be 'topped up' as risk of re-bleed increases with age(I am 45 now) I also have two tiny aneurysms that they aren't concerned about. I have been waiting 4 months now and just been told my consultant is away all of September! I would just like to be on the other side of it and I think its made worse as I am near the anniversary of when it happened. Most days I am fine but every now and again it's like 'I can't believe that happened to me!'

Hello to all my fellow SAH survivors, I was so relieved to read your experiences of ESA medical assessments. I had my SAH in September last year and was receiving full pay until March from my job. I worked full time as a learning support assistant before my SAH and am still not well enough to cope in a classroom full of noisy 8 year olds! I have poor sight in my left eye and struggle with noise, fatigue and memory problems. My employers have been great and suggested a phased return from September, just a few hours. This was put on hold when I found out I need to have more coils put in soon. Occupational health said they would not allow me back before I was over that and all is going well. I then received an work based interview at the local job centre (mandatory for everyone applying for ESA) the interviewer was an ex nurse who said ESA does not take into consideration people who have a job to go back to and that in her opinion I should not have to go through this. I then had to get my sister to drive me to the medical assessment a week later (over an hours journey) The Dr informed my sister she couldnt speak! I told her I remembered nothing of the SAH or the time in intensive care and I might need reminding. She said I would just need to do my best! I don't know the outcome, but what I do know is going through this is very upsetting and I feel a fraud. I know im not but it is so clear how little is understood about SAH and recovery from it. Lots of love to you all Steph x

Hi there, I had my SAH last September (right opthalmic artery) because the coils kept falling out due to the wide neck of the aneurysm they put a stent in. At my 6 month check after an mri I was told it appeared the aneurysm had 'reformed' coils had settled. I had an angiogram to confirm this and my neurologist has recommended I have more coils put in as I am ony 45!! Apparently the longer you live, the higher the chance of another bleed. I am therefore awaiting a date to go in for my 'top up' Lots of love and luck Steph x