Gill C

Good Luck Louise. I filled mine in exactly the same as the previous one but stated I have a brain injury & sent them loads of info off the Brain & Spine foundations website.

Hi Scarlett its amazing how many of us have had info missed or symptoms ignored. When I first when to hospital I didn't have scans of any kind as I only had head/eye pain & no signs of a bleed at all. 10 days later my vision in my right eye started to go & I was given a CT scan which cameNeuro back clear. 17 days after that with my right eye completely closed I had an MRI scan which was very painful to my already sore head. Eight days after the MRI I got a phone call to say they thought they had found something (an anyurism sp?) which could only be seen on part of the MRI scan. The following day I was admitted to Wessex Neuro & they confirmed with an angio that I had a 5mm anni on my right posterior communicating artery. The day after that I was operated on & my anni was clipped. I can only say that as my anni hadn't ruptured my symptoms weren't typical apart from the sudden pain & thinking my eye was going to burst. As the CT showed nothing (my anni hadn't ruptured) there seemed to be no urgency on the part of the hospital even though I was back to my GP lots in the six weeks before i was diagnosed & my GP friend kept saying because my right eye was so dilated it looked like a bleed. This was in actul fact due to the pressure of the anni on my 3rd nerve not a bleed. I can totally understand your fears about trusting the place that misdiagnosed you & I was lucky in that the neuro centre wasn't in the same hospital I'd first been admitted to. Howver on saying that I trusted the neuro centre completely & still do. If there was anywhere else you could go for treatment depending on how you feel its worth considering. I would def take the surgeons advice in all matters as they've seen it all before. I would def explore all options open to you, I know of a few treated at Wessex & some treated at the John Radcliffe in Oxford which aren't majorly far from you (well not in comparison to London anywyay) I hope you get a resolution that keeps you happy & confident in your treatment xxx

Daff I would suggest contacting PALS as it was suggested to me by the neuro nurse. All you need is a letter stating there is no medical reason why you can't drive again! My llicence was never revoked as I didn't have a bleed but I was worried about driving without DVLA approval so I did wait for 4 nearly 5 months & PALS was the final course of action. Good luck to you & I hope you get it sorted soon, I was lucky & got mine back just as Nathan started schoolo full time, hubby had had to leave at lunchtime to pick us up as I could walk down but not walk back (we live on a steep hill & I did it once & it nearly killed me) xxx

Amy its so hard to narrow it down but the main would be: 6 months is not a good estimate for recovery, most of us take longer & a neurophsych told me anything up to 2 years was standard. I wish they would put us in touch with another survivor so you know you're not alone & have someone to call, although not medically trained they could offer support. that we have a brain injury & to expect the same side effects. I never considered I had a brain injury & when I went to Headway I was stunned to hear that my symptoms were exactly the same as those who had had other types of brain injury. I also think to tell other people you have a brain injury makes them understand what we've been through more easily although saying you've had a stroke is more understandable. There are many many more things but those are the top three I can think of right now xxx

happy anni versary Steph.

As far as the nurse specialists they have been fab when I needed them but I did feel I 'wasn't really ill' & I knew they were busy with patients in the wards so I didn't really ring them in the early days. I did ring to try & get help getting my licence renewed as I didn't get any joy from the Registrar. Having said that my registrar gave me her email address at my 3 month review & I did email her with a couple of questions to which she did reply. The timing of my licence drama happened when she was on surgical nights & on leave so I got very frustrated & upset with the delay. I know I never saw any scans until my 3 month review & it wasn't until recently (after seeing a neuro surgeon at the support group meet) I had lots of gaps in my memory & the neuro nurses got my notes & helped me fill them in. I my asked hubby about those times I couldn't remember & he wasn't told anything either so was of no help. I know we are very lucky to have nurse specialist & I wish I'd made use of them earlier but I've always been a person not to ask for help, hence leaving Headway for several months before admitting I needed their help!

I was treated at Wessex where we were fortunate enough to have a nurse specialist (two currently) but although we were given the leaflet about sah it really isn't very informative. I found BTG very soon after my op & found it to be a wonderful place where I didn't have to explain how I felt (the fatigue, the odd head pains, mood swings etc) & where I didn't feel odd or weird experiencing the things I was feeling. The leaflet gave the basics & implied (as the sah nurse specialist did) that recovery was around 6-12 months but as most of us will say this isn't very realistic!! I contacted Headway too although it took me several goes to actually pluck up the courage to go & be assessed. That in itself was a revelation, talking to real people about the real issues that are common factors in all brain injuries. I suddenly realised there was a reason my brain was struggling & on one of their courses discovered which part of the brain did what so I could pinpoint my problem areas & say ' this is where the damage is, this is why I'm like this'. Sadly with the funding cuts (our) Headway are no longer running these courses but now Wessex are running support group meets every couple of months & that has been a very positive experience. I wish more hospitals did a 'buddying' system so that you can contact a survivor who has been there & done that before you. Having someone who can tell you it does get better is a ray of sunshine when you are discharged. I had nothing, no social worker or OT or social worker. I guess that means I am a lucky one not to be too badly affected but its a very scary prospect after 24/7 care to go home to nothing. I also think partners & family are left even more out of the loop & its very hard for them to adapt to the changes we are experiencing. More needs to be done for them.

Donna it is only natural to worry but my way of thinking is this: I trust the surgeons with my life, they saved it! If they tell me I am fine and time has proved that to me then I really need to believe that i fine. I know for months after the surgery I would pray to wake up the next morning but as time went on I realised I was fine without the praying. I really feel for you but like you say this worry is stopping you from living your life & creating new memories for you & your family. CBT is good but it takes some getting into the swing of things. I used to suffer from panic attacks when I was at college so I devloped my own coping mechanism which was to set myself small achievable goals for each day, then for each week & give myelf a treat when I met that goal. It all starts with a single day and then before you know it its 2 days then 5 then a week. Small steps Donna but it does need you to take control of the fear Big hugs to you (( ))

Fern step away from Google it is not your friend!!! I googled like mad after my anni was clipped & scared myself stupid with statistics from American sites regarding mortality rates after clipping surgery!! At my review after my op I was told I had a mirror image anni on the other side & that they wanted to clip it too. Like you I was devestated but was told I would only be in for a matter of days rather than weeks. My first anni didn't rupture so although I was clipped before that happened I would have more choice in the matter. I'm with the others I think in that I don't think I could live with the worry of knowing there was an untreated anni there just ticking away. I know I would have had treatment on a second anni even though on closer inspection of my scans they decided there is no 2nd anni. Remember we're here for you to talk through your fears whenever you need to. xxx

RB -R nice to see you. I can only say I have high fatigue levels, days where I am really tired I will feel dizzy too & very ocasionally some nausea. Are you sleeping ok? bad nights certainly contribute to all the above for me & the longer it goes on the worse I feel. Are you also getting some quiet time during the day to regroup & rest? I still find if I have had a busy time that I need some quiet time on my own. Are you working too? getting good breaks, keeping your fluid levels up? Hugs to you as it can be very draining feeling this way all the time xxx

I had my appeal today & a resounding victory for me against the tribunals system going from 0 points to 21 in 20 minutes!! I am still in the WRAG although the judge seemed to imply they had tried for theut couldn't support group find the other 6 points needed. As far as I am aware this means I will still have to do WRAG activity but like Sally will not be paid any ESA benefit having had my 12 months max. I knew this would be the case but for me it was about the principle of knowing the medicals are badly flawed & proving them wrong. One thing I did find is that a lot of the physical descriptors from the old form have now gone to I had no points for my eye or my back problem. All my points came from mental descriptors & show a change in the attitude towards cognitive issues but there still does not seem to be a recognition of or points awarded due to fatigue issues. I will update once I hear back from the DWP but my WRAG will continue to be phone based as far as I know. Still a victory is a victory hey??

Mickey all I can say is stop being so hard on yourself. Its not a case of failing, this is soomething that takes a long time to adjust to & your brain is struggling & your emotions more so to keep up with the changes in you. I don't see needing anti d's as being a failure either, we all need some extra help at times & I was stubborn & refused them for over a year. I still don't think I was depressed but I was very very low & accepting the tablets made me realise how long it had been since I'd felt happy!! I had some CBT which didn't really help & I have a fab hubby who had been absolutely amazing. Being a single dad & trying to keep it together for your daugher whilst having no one -to talk to about how you feel is a mammouth task - all respect to you for keeping it as normal as possible for her. But in doing that for her perhaps you are missing out on the grown up support you need? Perhaps if you see your GP ask about a talking therapy & ask about support groups which might give you that adult ear & ease your adult worries (I know you don't want to worry your daughter with stuff but we have to have a release somewhere!) I really really wish I had taken anti d's a long time ago, there isn;t plan to get me off them yet, its been over 12 months & I am thinking about reducing the dose but if I can't it doesn't mean I'm a failure! Being too strong for too long is not making you happy so I really think you need to get whatever help you can in whatever form it presents itself. Acceptance is a long journey & I was told generally it takes 1-2 years to get there, depression is part of that journey so we can't just skip that process & arrive at acceptance cos it doesn't work that way. I really don't want to preach or sound like I have the answer to everything cos I'm still fighting fatigue here> I don't think you need a butt kicking but more of a group hug from a set of grown ups who can help shoulder your worries with you xxx

Mark sadly misdiagnosis is all too common, I think at 6 weeks before my anni was finally found I might hold the record but as my anni hadn't burst they had only a headache & eye pain as a symptom (although mine were classic signs of an anni). I hope if mine had burst they would have found it quicker as would have shown more physical signs. Quite a few people on here were told it was migraine (as I was too although I was told cluster headaches, nerve spasms amongst other things!):crazy:

I'm good although fighting the dreaded fatigue as always! Seeing the Dr next week so will mention it to her (again!) Percentage wise I'm with Louise as its so variable but I guess I would say around 70% depending on how I have slept!

Erin try the Do it website which will show you everything local to you. I understand the thought of working with BI charities but not many are in a position to offer support these days since funding was cut.

I had a glass of mulled wine the other day & felt fine but if I have a large Baileys before bed I wake with a headache so I might have one sherry or baileys but nothing more. Its just not worth it for the headache the next day

Lovely to hear from you Lin, I think you are doing marvellously well with the help of the family around you. Physically the first 6 weeks were hell for me & that was pre sah!! The fact you are breast feeding just adds to that & I chose to bottle feed in the end so congratulations for persevering with it!! I am sorry to hear about the stiffness & hope they can do something to ease the pain, its a sad fact pregnancy can bring on these issues . Limpy?? I'm sure they mean it with affection:shocked: I wonder if you are having those first precious proper smiles now & a real personality is emerging? It goes far too fast so appreciate every second of it xxx

Hi there Doodles, I was clipped so hopefully I can help. I had about 1 inch shaved back off my hairline, I guess it depends where your anni is as to how much is shaved. I remember feeling like I'd been trampled after surgery & had oramorph but that is the only time I had it for pain relief. Most importantly for me the pain from my anni had gone immediately. My scar was from mid forehead to my right ear but be prepared for the staples, I was stunned to see them when they eventually let me look in a mirror, they look quite big & industrial. I was bed bound for quite a while (in HDU for a week or so, due to vasospasms) but once i was allowed out of bed even the smallest task like showering was exhausting. The best advice I can give you to aid recovery is just to rest as much as you need & can. As for driving it really is up to the DVLA, I was allowed to drive after 4 months but I didn't have a haemorrhage (sp?). Its really down to your neuro cons & GP to decide if you are up to driving (I had to get my neuro cons & eye cons to write to my GP so she could write to the DVLA & give me the all clear) If there's anything you want to know just ask away. Fingers crossed for an easy recovery for you xxx

happy Anni versary Kel xx

Bev we can all tell you to slow down but really its something you have to learn for yourself & usually the hard way! Some of the older BTG members will remember me learning it the very hard way as I thought I could take nathan to the cinema, have lunch out & shop within weeks of coming home. Needless to say I was totally floored before the shopping & the walk to meet hubby who was picking me up was complete torture!! It took me all week to recover from something that I wouldn't have given a second thought pre anni!! It still happens today although I am much more adept at knowing when I start to slow down & shut down, I can push through to some extent but it turns into full shut down eventually. Hubby can recognise it too but I try to take myself off or sit quietly before it happens. I think lin lin said if you broke a leg you would rest it for 6 weeks or so & as your brain is never resting even when you are asleep just think how much longer it takes to heal??!! Good on you for reaching that conclusion pretty early on in your recovery. It does get better honest!

Jord I would say if paracetamol & ibuprofen together are not helping then you should mention it to your GP. Pain doesn't aid sleep & sleep in turn may help lessen the headaches. My head is always worse when I.m not sleeping too well, my gp has prescribed amytriptaliine which really helps me but may not be right for you, best to get an expert view

Hi Jord, I've had panic attacks & it isn't easy to keep calm when the same thoughts are running through your head. I worked through my panic attacks without any help (I didn't know what they were at the time). Maybe something similar might help you control the anxiety. I used to set myself a task for the day, just a small one & then promise myself a treat if I managed to do it.It helps you focus on something & also you can see small progress steps along the way. I find it useful to have the tv or radio on as it helps distract you & singing along can really help too (ask Win!). You can always pm me if you need a shoulder too. There are good days & bad just cherish the good ones & try not to focus on the bad ones. (ps today is a not too good one for me, having a shutdown whilst out & about it not fun!) xx

Great advice from Daff & I agree whole heartedly. You can waste your life away worrying about things that will never happen. I've been on BTG for 2.5 years & not heard of anyone having another rupture in that time. I worried lots at night about not waking up in the morning but I never worried about it happening again in the daytime (for some odd reason). I put my trust wholly with the Cons who told me I was no more likely to have an anni than the next person. I do feel I used a lot of my good luck in having an undiagnosed anni for 6 weeks & getting it seen to before it burst but as time goes on it does get easier.

Being at home alone is scary enough never mind looking after a small person as well. Hubby took 2 weeks to work at home with me when I first came out of hospital & my son (then aged 4) was at nursery so he went for full days instead of half days. I had to change him to full days until he finished nursery in the August & by then I was sort of ready to look after him (I came out on 21/6/10). I was cooking meals (basic) & dressing him & hubby helped as much as possible. Perhaps its worth considering childcare for your tot until you feel happy to look after him on your own. Or speak to to Surestart to see if they can offer you any support. Its hard but soon you will be doing things you used to, be strong

I wasn't particularly assertive pre op & I'm even less so now. None of us want to make a decision so that makes me cross but I still don't want to make a decision either. I think I object more to things I'm not happy with but hubby might say I'm just an arsey moo anyway lol!