Gill C

I'm with louise on this, I haven't even attempted to go back to work, 2 hours of the computer course i did had me in tears of exhaustion on the way back to the car. I don't think any job is worth sacrificing your health for (I am know I am lucky that we are going to see if we can manage without the extra money & thats not the same for a lot of people) so if there are options I would def consider them seriously

Welcome to the BTG family Paul& never apologise for your emtions, this is the one place its safe to let them out. I am sure the cheating death thing has all hit us at some stage in our recoveries & even now I have difficulty dealing with that thought!! You are in very early days of recovery so its best to rest as much as possible & allow your brain to heal in its own time. Do a little at a time until you feel you can cope with more & drink lots of water. I sometimes get the taste thing but it does get better, in the early days after my op they were giving me sodium tablets & that made everything taste salty (yuk!!) Did you have any treatment for your anni? There are lots of both coiled & clipped people on here & a fair few non anni people too so no matter what there is always someone who has been through it before you. Take care & chin up xxxx

I've had both an MRI & an angio, don't know of a combined one though? MRI is painless & just noisy more than anything, you can take your own music if you want but you will have to remove any metal jewellery or clothing . The Angio is done through your groin & again totally painless although when they inject the die into your brain you do get flashing lights behind your eyes. For me the worst bit was the pressure on the entry site to stop the bleeding which took ages for me & I bruised quite badly. I fwould say if you are having an angio take some socks to wear cos it was freezing when I had mine. Do tell the staff you are nervous as they will be used to dealing with nerves I found with both the thought of it was worse than the actual scan.

Hi cath & welcome to BTG. It certainly helps to have laughter in your day, I'm sure it helps with the healing. I think it was LIn Lin that said if you broke a leg you would be off if for 6 weeks while the bone healed. Your brain is a huge complex organ & even when asleep is carrying out so many functions we take for granted. Its not suprising it takes a long time for it to heal physicallly & emotionally even longer. I am almost 2 years post clipping & I still don't feel emotionally healed but I am getting there. I know without BTG it would take much longer & be far lonlier!! WE;re always here to make you giggle or offer advice (I'm not so great on making people laugh tho!)

http://www.headway.org.uk/shop/living-with-an-acquired-brain-injury.aspx new book put out for those with ABI

Welcome Ed, BTG is a lifesaver for most of us! I remember coming home from hospital & praying every night for months to wake up the next morning I was so scared of it happening again. Now I am pretty relaxed about it knowing that I am as likely (or unlikely) to have an anni. Jump in & come see us in the green room, its pretty busy right now but that means there is always someone to help if you need to ask anything

Claire if your pupil on one side is significantly bigger than the other in daylight please go to A&E. this indicates pressure behind your eye & was the only sign of my anni other than the severe pain. As time went on my pupil got bigger & bigger & everyone kept saying it looked like a bleed, it wasn't but there was a 6mm anni pressing on the 3rd nerve. Please please go & get checked out now xxx

that is criminal to make you pay it out of your ESA, I always assumed that would be additional to your ESA. Totally shocked & horrified:shock::shock:

I think the idea of self funding in principle is good but in practice people like us lose out. The idea is that social services assess your needs & then make a payment to you to cover that, its then up to you how you spend it ie home carer, taxis, support groups like headway if that is what you need. It means you can choose a carer rather than have one allocated to you.The payments are over & above ESA In principle social service have neither the time or the skill to assess the needs of people like us, its the same old thing 'you look fine so you must be fine'!! I couldn't even get social services to come out & assess me, that was done on the phone by asking if I could wash & dress on my own & feed myself!! job done!! This means that Headway are losing out both ways, in direct support from the government & from the point of view of personal funding. If we had to pay the full price for a session I really feel headway would have to close , I was told £40-£60 a session so a contribution of £3 is nominal but when my ESA stops (today) I wouldn't have even £3 to give them!!!

I've now finished reading REbooting my Brain & would def read it.For anyone who didn't like the Jane Laportaire book this is much more human, she is infinately more likeable & he story is much more true to life as we've experienced it. I found myself close to tears at a number of points as it reminded me how awful it is for our partners to go through this & be so helpless If you can get your hands on it I would def give it a go

Mine was similar to Lynnes, I rang them & they sent me a referral form which I filled in. They rang & we attended an assessment session before Xmas & then I didn't hear from them until Jan when they offered me courses that they felt woulf be of benefit to me. However we were told that the direct funding they got from the Government was stopping & that personal funding would take its place. I ran social services but as I could wash & dress myself etc they didn't want to know, in fact they didn't have a clue how to assess someone with a brain injury or know what problems we experience. So I never got personal funding so I couldn't pass it on to Headway, we always paid a nominal sum for tea & coffee but recently because of the lack of funding each session will have a fee of £3. I don't think that goes anywhere near funding the service but it does help. I hate to think how I would have been without Headways help, hence today I am going to make cards for them to sell to raise much needed pennies

Great news, hopefully this will bring you some peace of mind now & you can recover in your own time xx

Lin I agree with what the others have said, keep an open mind about your birth plan. One thing I would suggest is an NCT ante natal class as they do teach you how to relax & breathing techniques which i found useful in the early stages. I planned a natural water birth at home but ended up with everything except a C section!! I was in labour for a long time too & I couldn't control my breathing because of the extreme tiredness so find it much harder to cope with the pain. The eipdural was fab although I could still feel the contractions they didn't hurt but the down side can be that its harder to feel the need to push & i ended up with foreceps delivery. I did beat myself up about it for a long time afterwards as it was as far removed from what i wanted but both Nathan & I were safe & that is all that matters. Do have an open mind about birth & discuss the water bath with the midwife as an option, I have a friend who had one at home for her second birth & said it was totally amazing!!

clairey you might talk to mary B as she has fibro & suffered for a number of years, she may be able to shed some light on things for you x

I have downloaded the Rebooting your Brain book onto my kindle & have started reading it. So far it is very near to making me cry so I think that is a good thing as the Jane Laportaire book never made me feel how real it was or identify with her. The initial chapters are written from her partners memories of what happened to her as she has no memory of that at all. So far so good I think

GG that is exactly what I said to my Dr when the last tests came back clear. At least there would have been something to treat!! I will ask tomorrow at the Wessex meet, I think they are covering spoon theory so it will be interesting to see what other people say. (I was asked to present it & talk about it but I hate any form of presentation so had to say no!)

Some new info on the Brain & Spine foundation website about a new book on SAH http://www.brainandspine.org.uk/helpline/patients_perspective/subarachnoid_haemorrhage/rebooting_my.html

Claire I am remarkably well thank you considering what could have happened to me (my neuro told me in no uncertatin terms that had my anni burst I would have died) although I think the nerves that control my pupil & movement in my right eye are permanantly damaged so I still have double vision. I had the same tests as you, the baring of the teeth & raising arms above your head, pushing & pullin the Dr's hands. I would say if the amytrip is not sorting the pain out then you do need to have further investigations done as soon as possible. I know Karen who runs the site had a bleed before her anni burst so she may have somethig to say which might help My full story is also long but if you have time you can read it here http://www.behindthegray.net/vbulletin/content.php?278-Gill-s-Story

Clarey I was told so many different things in the 6 weeks between anni & diagnosis. As my anni didn't rupture I didn't show the signs of a bleed for almost 2 weeks. The pain in my head (behind my eye) was excrutiating & I thought my eye was going to burst. At the hossie they gave me paracetamol but it didn't touch the pain. I had a migraine while i was there & thats what it was initially dismissed as. I went back to my GP several times & was told a trapped nerve, cluster headaches & was firmly told it wasn't life threatening, I hardly slept which made the pain in my head worse, I was given amytriptaline which helped some but didn't get rid of it entirely. I started to get double vision about 2 weeks after the pain in my eye & my pupil started to dilate, a ct was done but was clear. It was then a 17 day wait for the MRI during which my pupil was fully dilated & by the MRI I couldn't open my eye at all (3rd nerve palsy). Both my own GP & a GP friend said it looked like a bleed but nothing was done until 8 days after the MRI when I was told it was suspected I had an anni. I never really knew how dangerous my situation was until after the clipping. Some of your symptoms could be those of a migraine (the blurred vision, the pressure headache, the pins & needles) but for them to happen suddenly def needs further investigation in my opinion. xxx

Althought MRI's are great they don't always give a full picture. I had a CT which was clear & then 17 days later an MRI. I was told they suspected an anni but they could only see it on part of the MRI, it wasn't confirmed until I had the angio. If you have concerns I would def be back at the GP asking for more tests & to see a neuro cons, don't let up until you are happy with what has been explored & found. i was fobbed off by the first Cons I saw & was undiagnosed for 6 weeks so please keep hassling them until you are sorted out properly. Wishing you all the best xxx

GG as you know my main problem is fatigue, I have had all the blood tests done at my review & more recently before being prescribed anto d's & they all proved negative. I would love to prove that fatigue is a real issue & despite knowing from Headway this is a common side effect of any brain injury. Some days I look fine but then when I remove my glasses hubby says I look panda eyed & tired. I was told at the hospital I had sleep apnea but when I asked my GP he ran through the scale for having sleep apnea & I scored zero, I don't & never have nodded off on the sofa or in the car or during a conversation - by that scale my hubby must have it really bad!!! Because I scored zero he won't refer me for sleep testing & I have accepted that fatigue is part of my life. I too would love to go back to work but my max limit is around 2-3 hours I hit the wall, any meaningful job is not going to want me for less than 4 hours a day. I want to be able to carry out the other things in my life like card making, the school run, cooking etc so its a trade off with only enough spoons for one set of activity. Having been sleep tested I think you have the most comprehensive picture of your fatigue & know that it is very real, unfortunately it may not be caused by anything that can be treated. But hey if you find something that helps spread the new & I will be the first guinea pig for you!! xxx

I too can understand your frustrations. I had an anni without the bleed so I am told. My anni was clear on the angio (6mm) but when I had my review I asked about a bleed & they said there was no sign of any bleed from the site of the anni. The registrar checked my file & said the only area of blood/bruising was on my leg from the angio site. I did have vasospasms during the op & i remember the Cons saying he had never seen them before when there wasn't a bleed. I asked about the area of damage ot my brain & was told in was confined to the area of the surgery (I was clipped). So it seems all the problems I am having with fatigue etc are as a result of the surgery (apart from the problem with my eye). I have found most medical staff have differing opinions on most things & that is very frustrating. Maybe it would be useful for you to have a copy of your notes or arrange a meeting with one of your neuros to discuss the differences in diagnosis?

Hi Tim & welcome to BTG. glad you found us. Just shout if you need to know anything cos there is always someone here who can help or offer advise Take care xxx

I had a check up at 3 months but then I was clipped not coiled like you. I guess they may want to do a repeat angio but they would tell you that it a letter as you would need to allow a couple of hours for that. I just asked questions about how I was feeling & hubby did too, they checked me over (a visual exam only) & did take me off for some bloods to be done as I was having problems being too hot or too cold so they wanted to check my hormone levels. I think it;s just to see if you are coping ok & not having any problems since the coiling. I saw the registrar not Mr Sparrow who did my op but she was very helpful.

The same thing happened to someone at my hubbys work, she had an SAH last year & was coiled at Wessex. I wanted to contact her cos I know the struggles she would ben having once she was home but unfortunately hubby is too shy to ask for her details or pass mine on to her. I think it's a great thing that you are living proof that life after sah does go on no matter how bad things are when you are in hospital. Having a 'mentor' who is months ahead in the recovery process will help her no end. I truly wish Wessex had a mentor programme to new patients & i would love to be part of it.