momo

Congratulations SarahLou, sorry I'm a bit late. I also love your quote. I think of my anniversaries as another box ticked. Good that you had a nice day. Take care.

Hello Desy. I've only ever had MRI scans ( apart for the angio I had during the coiling). These showed enough detail so no angio required in my case. I think if you were to have an angio they would tell you what to expect in the letter and the risks of angiogram etc. Worth phoning to check..... and yes that is a coincidence!

Brilliant Daff you are a wee gem for sharing this! I totally agree change, adapt and progress. I've also learned how to hide my difficulties and I've actually become quite good at this. But I do get caught out by my memory. I find its good to be frank with people so if I forget something in conversation (this happens quite a lot) I just say... sorry my memory has let me down again. The more I've adapted (and accepted) the more confident I have become. I don't feel so crushed anymore. Wish I had got my assessment in writing but I just didn't think of it.

Hi Wem I found that fatigue is my biggest challenge unfortunately for me it hasn't gone away completely but I have learned how to cope with it and recognise now what will bring it on..but not always. Sometimes it hits when I least expect it. My husband also keeps me in check and reminds me to rest if I'm overdoing it! When I have good days I'm so happy to be feeling so good that I can get carried away. I have found though that this recent spell of hot weather has really increased my fatigue. Its as if my tired spell during the day has been brought forward by about three hours which is unusual. Just the the other day I had to cancel my afternoon plans as I was pretty much 'whacked' by lunchtime! I'm nearly five years post SAH. I would say to rest up as much as you can and yes stay calm and I hope this passes for you soon. Worrying about it can make it worse. Take care,

Hi Daffodil, this is a really good list and will be helpful to others. Its good that you went to this. I had similar testing with my psychologist but I don't remember much about it except that I thought I had done really well then was disappointed when I hadn't. If I could just add a few more things to the list... Stressful situations, I try to avoid stress at all costs (I know this is not always possible) if there is a difficult phone call to be made for example I delegate! I can't function if I'm stressed. Mornings are much better than afternoons for me so I try to do the important things in the morning. Diary/organiser (written not electronic) can't get through the day without it now. Thanks for posting this.

You're absolutely right Mary the little things can really throw us! What I also find about the memory is when people say don't you remember or I told you that etc etc!!They don't mean to be unkind of course but it really hurts even now after all this time. We need our memory to work and if it doesn't its a huge thing! But we can compensate. Sorry to go off thread a bit but nice to see you here Louise and hope you manage ok while your husband is working,everyone else with memory problems.. the planner is a must.

Annie...that just shows how complex memory is! I was told by my psychologist that because the organising centre of my brain has been affected this affects so many things...memory being one of them. It explains why I still have my long term memories (actually my long term memory is really good now) but my short term memory is very poor. Day to day activities are just not being retained or put into the right slot to start with. My memory is working but its not getting the correct information to start with. (It also explains why I can't read blocks of text with no gaps or punctuation...words joined together etc. Just cant make sense of it.) I was told that this may improve with time as more pathways open up to compensate. (Not happened yet though) Louise I keep a diary/organiser now its the best things I have done post SAH! Wish I had kept one right at the beginning of my recovery. It makes me feel in control of things and I would be lost without it..mine is broken down into hours each day so I can record exactly when I make a phone call for example(great if you need to phone a company back, feel really quite efficient now!!) Infact I wish I had kept one pre SAH. I think they sell mid year diaries at this time of year for a reduced price so do check this out if you don't already have one, (those of you with memory problems,) you won't regret it.

Congratulations Tony. I felt quite emotional on my 1st anniversary definitely a time for reflection. I also feel I was wrongly advised about timescales for recovery, 6 months to a year I was told! Has taken a lot longer than that but the good news is I'm still seeing improvements... I'm 4 years and 8 months in. Hope you have enjoyed the day, its good to be here,

'Fuzzy head' or feeling like I'm under water. (This can last for days after a stressful event.) Disturbed sleep with many thoughts racing through my head. (Again this can last for days) Plus what everyone else has said.

I've been having quite a few memory gaps recently..not the usual sort of memory problems but complete blanks. I think its because I do a lot more now mentally..talking to people for example..I like to talk! But if over do it my brain gets tired now and I get complete blanks. Like my bank numbers/ passwords etc which I have memorized but now I have days when its all just gone its as if my brain just says 'no you've got to be kidding now..I'm done'! Often wonder if its the start of dementia, hope not, I'm 4 and half years post SAH.

Hi Amy I spent a month in hospital which I have no memory of, then I was transferred to rehab which I do remember and hated it there so much so that I demanded to get home after just a few days. Looking back this was a terrible decision as I was nowhere near ready to go home. I was extremely angry, agitated, distressed, sad etc and really terrified that I wasn't ever going to recover from this. My GP was excellent and I continued to go to rehab as an outpatient but again I was very awkward and demanding didn't really know what to ask and how but they tried their best with me. I had a physiotherapist who came to visit me and an occupational health visitor, both were very good. I think at the very early stage I would have benefited from one professional( from the hospital where I was treated) who knew me and my case history, the extent of my bleed and who had all the information on what the outcome would be for me, someone I could phone when I became desperate or even someone who could visit me as I wasn't able to go out much at that time. There is huge variation with recoveries depending on the extent of bleed, location etc and all our outcomes will be different. So someone with just a bit of general information wouldn't have been enough for me. I needed reassurance in the first few days at home because although I was operated on and had made a good physical recovery, I was still convinced I was going to die from this and family etc couldn't really convince me otherwise. I think to be discharged from hospital without good backup is wrong, I did get a leaflet I think, but I needed to hear the words and try and make sense of it all, I had so many questions.. I needed accurate and precise information about me and my case.

Thought I would share this clip with you of Alistair McElraine who used to play guitar with the band Texas. The interview starts after the first musical clip. His particular Brain Haemorrhage sounds very similar to mine as I was given similar odds. Also I remember nothing of my month in hospital but I do remember going to rehab, the change of hospital I think. I became very agitated in rehab and they only managed to keep me in for 4 days. Here is the clip http://www.bbc.co.uk/programmes/p00r7hc8. So good to see that he has made a good recovery.

That's really good news Jess

I found this article : http://www.annals-neurosurgery.org/papers/erdogan_e/erdogan_e.pdf and found it really quite interesting. What I would really like to know is how this is different from just increased blood pressure? Has anyone else heard of Haemodynamic stress?

I'm thinking of asking for a second opinion(UK) but not sure how to go about this.. Has anyone here ever had a second opinion. Is this arranged through your GP or neuroconsultant and can you choose who you would like the second opinion from? (I would prefer not to be seen by someone in the hospital I was treated in.) I am prepared to travel to different city. Also how long does this take generally. Any info on this would be good, thanks.

I've read this paper twice and can't find anything about 'long term morbidity' for aneurysmal patients. (but it is more than likely I have missed this) As far as I am aware the long term outcome for aneurysmal patients who have been coiled or clipped is extremely good. My family were told that if I didn't have the coiling then the chance of re-bleed would be 80%. After successful coiling there was no chance of re-bleed. I think the study is a small one and by there own admission is flawed as they only re examined 33% of the original number of patients, not enough. The part of the study that interested me was the mention of micro aneurysms. Could it be that all bleeds are maybe caused by aneurysms and that they are so small that they can't be picked up with our technology...yet..? Or is it a case that very small capillaries and viens sometime rupture for no reason? I've got so much to learn about all of this. Karen I agree with what you say about the initial diagnosis, the ambulance crew in my case quickly suspected a SAH and because my bleed was a bad one, their quick thinking helped save my life.

My Spontaneous Dissecting Aneurysm I have recently found out that the type of aneurysm I had that ruptured was a Spontaneous Dissecting Aneurysm. So not only (as we all know on here) is it so very rare to have a ruptured aneurysm at all but the type of aneurysm I had was a very rare sub type. My neuro-consultant has only ever seen 3 of these. Basically it formed then ruptured spontaneously. I hadn't been walking around with it, it was nothing to do with a bump on the head three weeks previously it just formed, then ruptured in an instant. Having thought about this and what my consultant has said I now feel that not many people have survived this particular type of aneurysmal rupture, I have no eveidence to support this just this feeling I have. Mine was successfully coiled and I have now been told it is completely occluded. I do have two infundebella, not sure of the spelling here! They are stable entities, not aneurysms. I will be having another scan in five years although my consultant expects to see no change with these. Happy with this. So is there anybody out there who has had a Spantaneous Dissecting Aneurysm and just out of interest what were you doing at the time?

http://www.hartlepoolmail.co.uk/news/local/boost_for_brain_trauma_victims_1_1035712 Just read this interesting article today,

I'm sure you've not hit your plateau blueday and we all have to think that. Not listened to you links yet but I will. Right that's it I'm changing my avatar...again!! Take care.

What a nice post Lin lin, thank you. I too feel thankful, every single day. Take care M x

Aw blueday this was just so good. Thanks for posting this. I thought I knew so much but really I know very little indeed. So much to learn. Before I came on this site I didn't even know what aphasia was. Thanks again. Oh and at the beginning I laughed (at his joke)...very few things make me laugh.

Thanks for this blueday. I feel I know a lot more now. When she described the sound she heard whilst having her haemorrhage it was exactly like what I heard that day at the gym, I had forgotten about the sound! I'm going visit the Brain Help website. I think all medics/nurses should listen to the first clip as part of their training.....Well spotted blueday.

Thanks for this Jen, quite fascinating reading....keep up the good work.

http://www.disabled-world.com/artman/publish/brainsupplement.shtml Found this web site thought it was interesting and could be useful. (But do check with your doc before taking supplements etc. they may not be suitable for everyone)

What a nice 'inspirational thought' Blueday, nice to read and well written. Enjoy the rest of your day, momo