Gill C

Mandy there is an orthoptist dept at qa. I was there for the first year under a cons too. Jill the orthoptist is lovely so might be worth getting a referral there. I spent a long time plotting points on a graph in.a mirror but unfortunately they couldn't help me at all. I have the mirena too, I checked with the nurses at the brain and spine foundation before having it fitted. I'm due.for a renewal in October.

Carolyn saw this on fb,is this the new treatment? http://www.onlinetmd.com/medtronic-fda-approved-medical-device-pipeline-flex-21915.aspx#.VOvb0PkVhWg

Even though my licence was never revoked it took them 5 months for them to give me the all clear. I did pester them a lot and it still took ages. For me it was a case of getting the.Neuro and eye cons to write to my gp to say I was ok to drive and then getting her to write to the dvla. As far as I'm aware they never wrote directly to my Neuro.

Rob welcome to btg. I asked at our surgery and there was no other anni sufferer there and mines a big surgery. Since having my op I only know of one other sah sufferer and that s a lady at hubby work. My gp is as good as she can be and willing to listen but she doesn't really understand. This and headway are the only places I've found where you're really understood.

We were pretty much the same although we were given the brain and spine foundation booklet. To be honest the booklet really deals with physical recovery (ie healing from the bleed/surgery) and not much else. Btg is signposted in there but I found it going through the brain and spine foundations forum. We had a Neuro nurse to ring but I felt silly ringing for every little twinge or hiccup. I thought they would think I was silly and as they were so busy they wouldn't have time to deal with me. I never rang and wish so.much that I had earlier on. I was told about headway and put off ringing them as I thought it was for people with brain damage and I didn't have brain damage!! I tried for 6 months to cope on my own and just didn't really cope, I truly thought I would be better after the 3 months recovery was supposed to take. In Jan 2011 realised I wasn't managing on my own and rang headway. My assessment was tearful and tiring but my intro meeting was a revelation.all the things I felt were what everyone with a brain injury get, I want going mad after all.I attended several courses there which were so helpful and supportive but sadly now, due to funding cuts, most of those courses are no longer available Headway and finding btg saved me I'm sure

Mandy my bad eye is covered/lens frosted as my good eye meets with dvla standards. I have to be single vision only to be able to drive. My situation is a bit unusual in that the damage to my nerves (3rd nerve) was caused by an undiagnosed anni pressing on the nerves for 6 weeks rather than a bleed (unruptured anni). Mine is unlikely to get better hence being discharged from eye clinic. I don't think ill be able to make the meet this weekend, if you go say hi to Lesley and Jane for me x

Mandy hi and welcome to btg. Another Portsmouth girl here also treated at Wessex. Although it's very frustrating you are still very early days in your recovery. I'm 5 years post clipping in June. Much improved since the early days although fatigue is a constant companion just not to the same extent. I too have been left with double vision, mine was monitored for the first couple of years but I was discharged when there was no further recovery. It's Still possible your vision may improve or that a prism may help you. There are several Wessex ladies on here, we sometimes meet at the Wessex support group, next one is next month I think. If you need any help or support just shout on here (or by private message) there's always a lovely person around to help x

I had an unruptured one too but spent 17 days in hospital and some of that in hdu. I had vasospasms after clipping which lasted for 10 days or so. I had an argument on Facebook with people saying how wonderful brain surgery is and how quick the recovery time. I pointed out that most elective surgery carries a smaller recovery time. I know that in a way mine was elective but as my anni had already grown it was treated as an emergency procedure. This sort of coverage makes me so mad! It leads to people thinking we are malingerers and making it up!!

I found that I'm more susceptible to stuff and it lasts longer. I started taking a general vitamin and multi vit tablet daily and things have improved. I've had all my bloods checked so there's nothing wrong with them which could cause a reduced resistance

Fab poem poppy

Tree mine was discovered before rupture but I was told in no uncertain terms surgery was the best option and I decided to have clipping surgery. Mine had inflated 6 weeks before it was find so I think the risks of leaving me were pretty high.

Mine was initially found on an MRI, nothing showed in a ctrl scan as mine hadn't bled. The mri only showed part of the anni so I had an angiogram to confirm size and location before surgery.

I'm 4 years post clipping and still get an itchy scalp or creeping sensation. It's been worse in the hot weather sadly. There are a range of odd sensations that affect my scalp including stabbing pains or a feeling of pressure but I know they are entirely normal after speaking to people on here

I never wake refreshed and haven't for many years. I have sleep apnea which doesn't help and although I have been on a cpap since Christmas I am feeling more tired than ever. The sleep nurse said it might not help with the fatigue but as I wasn't getting any rem sleep my heart rate was always high. So the cpap is protecting my heart but quite honestly does nothing else for me. In fact since being diagnosed I feel a bad night much more. I wake at least twice to go to the loo and take a while to go back to sleep. Have been waking around 5 ish as our room is east west facing and when the sun comes up I wake up. I've given up saying I'm tired, for me it's a given every day. Would love to be refreshed. I think the best I felt was over Christmas where I slept in every morning for almost three weeks! You're def not alone hon.

I'm with dawn on this. I have given up telling people I am tired all the time. I haven't seen the girls for weeks, we normally meet every Tuesday, and there is one particular person there that just doesn't get fatigue.I've been told she knows what tiredness is cos she has 3 kids!!! I've given up saying I'm too tired to meet up with them, that my head feels tight and my eyes and bones hurt. I have much better balance these days but when I'm tired it's worse. I'm 4 year on (almost 4 years post op) so the wobbles are much fewer.I feel your pain, people just don't know how raw you are still feeling and they are probably using humour as they don't really know how to talk to you. Again I've learnt to let it go over my head but that is something that comes with time. Acceptance is a long road but you will get there. In the meantime can someone you can really talk to have words with the people who are 'making fun' of you and your situation? Please don't suffer in silence.

I suffered migraines from puberty. I found heat and cold or stress set me off. I got one having a cold plunge after a sauna and at school used to have them every week at the time of our French aural test. Food def did not figure in mine at all. When my anni inflated I had a migraine in the hospital and at the worst I had 5 mild ones in a single day. Luckily for me they have stopped since I was clipped and although the neuros say the two aren't linked I think that the migraines were caused by the weakness in the blood vessel where the anni formed later. I tried migraleve which worked ok for me but didn't stave off the headache completely. The only real cure was to lie in a dark room for a few hours. Mind you mine didn't last as long as yours so I would definitely explore any options the dr s can offer you.

Daff I can only tell you about my own experience. I too felt exhausted all the time, when I wasn't tired I was angry but also totally deactivated. I had been offered anti depressants on number of occasions but always felt I wasn't really depressed. I was doing more things but still feeling tired and that got me down. I had cbt which only helped a little as I was overly anxious about things happening again. I finally agreed to try a low dose anti depressant about 18 months ago and was surprised how much better I felt. I felt calmer and happier (or a lot less low) I really wished I'd tried them before. I am still constantly tired(sleep apnea doesn't help) but I'm more able to cope with it and prone to less anger or frustration. I am now thinking of trying to come off them but have no idea how I will feel and that does worry me. It will be a gradual process over a couple of months. It's an option to consider if nothing else is working for you and it doesn't have to be a long term thing. A temporary boost may be just what you need xx

I didn't get a ct scan for 10 days after the pain behind my eye. Even then it was clear. It took another 4 or so weeks to be diagnosed. One of my friends is a gp and she kept saying I should sue but nothing that happened would have made up for issues I have post op. I have to say initially I was diagnosed with migraine and didn't have classic Sah symptoms apart from the severe head pain but then my anni didn't rupture.

Hannah mine was unruptured too. Mine did suddenly increase in size and for the 6 weeks before I was clipped I was in a lot of pain. I remember waking up after the clipping and apart from feeling sore the pain in my head had gone I will be thinking of you on Wednesday. X

My dad had a stroke (20 years ago so no idea if it was sah) and lost his filters too.he said the f word for the first time in my hearing and at a family meeting in front of all the staff and other families asked when he could resume his sex life. Both my mum and I were mortified! He also said that the nurses were getting into bed with the patients at night. Things did gradually get better as his brain recovered and as he relearn his filters on what was suitable to talk about in public. It will get better trust me. Hth? Xxxx

Hi yellowdog and welcome to btg. You're certainly in the right place and you've been through an immense amount. I too didn't have the bleed and was clipped before that happened(despite a long wait). I think with regard to the scans its something that needs to be discussed and you need reassurance to be happy with the time period between scans. The only thing I would add us that the neuros are the experts and sometimes we have to defer to their wealth of knowledge. With clipping there are no regular scans as once clipped it should not move, there are others we who are coiled that are checked every few years moving to every five. I'm not sure if anyone on here has been wrapped but if there is I'm sure they will be on to reassure you. I think you really have to be comfortable with every two years so you need to talk out the reasoning behind it. Hope you appointment brings you some peace of mind xxx

Braingirl I think you need to speak to your neuro & ask for a referral for counselling. I had a basic CBT course which tries to interrupt the flow of negative thoughts developing before they get too big to handle. Sounds like that would be something that would benefit you? I do feel for you as we've all been there, I remember praying at bedtime every night to wake up the next day. I also joined Headway which gave me a lot of support & info and helped me understand what had happened to me & to be able to rationalise it in my daily life. xx

Lauren perhaps you need to get a hormone profile done, sometimes you can get damage to the pituitary gland with an SAH. I had mine done as I was sweltering in hot weather and freezing in cooler weather. I've also started taking a good all round vit supplement, perhaps worth considering but your first port of call should be your gp x

I don't think there is a set time for a ban, everyones sah is very different & everyone recovers differently. I don't think you would be able to get the DVLA to pin down an exact time scale. I think for me it went as quickly as it could (with a slight delay in getting the correct info to my GP) so 12 weeks sounds about right. I appreciate how frustrating it is dealing with such bureaucracy but these things take however long they take. The paperwork has to go to the medical team & that takes time to go through. All I can suggest is that you contact them every couple of weeks to see how things are progressing.

It took me 4 months although because my anni didn't rupture they didn't stop me from driving. I had to get the eye clinic to write to my gp stating that my one good eye met the dvla requirements and then she agreed to write to the dvla I was fit to drive. In all honesty it is the gp who had the final decision as they see you more often .The DVLA didn't contact my Neuro at all but the registrar did write to my gp saying it was up to the DVLA which caused a hold up. I hadn't had any fits since the op so my eyesight seemed to be the sticking point hence the letter from the eye cons to my gp. I have just informed the dvla of sleep apnea and have to fill in a form but as it is being managed with the use of a cpap they are happy for me to carry on driving. It's an odd system and I did badger them a lot to try and speed things up. I think they got sick of me calling every week or so!! Good luck with getting your licence back xxx