goldfish.girl

Jan - good luck for the op, i'm sure you will be fine. June 1st - it will all be over & a holiday is a great way to celebrate!! As I said before, waking up from an elective coiling was totally different to waking up from a post bleed emergency op. I think you will be pleasantly surprised. Will be thinking of you on 31st. Michelle xx

Hi Craig, I can only tell you my own experiences. My mothers sister was left severely disabled by a brain heamorrhage, as far as I know, I am the only other family member to suffer SAH. I had mine at 38. Three aneurysms were discoverer (making it likely that this has been a congenital disorder according to my Dr). I had 2 coiled when I had the SAH and the 3rd coiled 3 months later. The second coiling was totally different from the emergency one. I was fully 'with it' when I came round post op & allowed to go home the next morning. There are always risks involved with a brain op & your own Dr should be able to give you all the info you would need should you have to make a decision. My oldest son is 21 and has been offered scanning, although he was told SAH is rare under 30 and has decided to leave it for now (I think we all believe we are invincible at 21!!). He was also advised to consider that they may find aneurysms in areas that they are unable to treat & this would have a major impact on his life. It would also give him the opportunity to reduce all the risks if he possibly could. Personally, having been through SAH & adjusting to the aftermath, I would take the opportunity to be screened in the hope of avoiding it. It is a massive decision for you to make and only you can decide how you want to proceed. Best wishes & good luck if you go ahead with the scan. Prevention is better than cure must be a well known phrase for a reason? Michelle

Hi Carolyn, I think you are so right - you posted something that many people feel but perhaps didn't want to post themselves and the suggestions & support offered to you after your post will be invaluable to many other people on here. Thank you for doing it! I hope you are feeling a bit better. Michelle x

Ah that explains a call from my dad today about drinking coffee! Thanks Donna Michelle x

Hi Zoe, I think Pennys idea is great (as a novice veg patch grower myself). It gives me a great sense of achievement when some of my veg works. Perhaps you could try to make some raised beds & grow easy to grow things so there is not too much physical work involved? Or tomatoes, courgettes, lettuce, herbs etc in pots (which you can buy in DIY shops fairly cheaply) and Richard could start off just watering them or asking the kids to water them - it might spark off an interest in growing other veg? The kids could also be involved with Richard as the site manager? My son has eaten veg he wouldn't normally touch after growing it himself! Maybe it would also give Richard an incentive to cook things with his produce (soup or perhaps preparing a salad to start with?) Michelle x

Hi Caroline, I'm sorry to read you feel so down just now. I suffered very badly from depression for years before the SAH too & spent time in hospital having ECT. I felt for a long time after the SAH that it had cured the depression as I was just so glad to be alive but since leaving work, losing my licence & my son being so ill, I have really struggled over the last 7 months. I think Sandi's advice is great and the others (sorry, I get to the end of a thread & forget who said what). Someone mentioned making use of friends & going out walking help. I agree with that but I know sometimes you just want to shut yourself off from people. I think getting over that & being with friends and exercising really do help. It is hard though to make that all happen when you don't feel so good inside. We all survived for a reason & hopefully one day we will all understand what that reason was & find happiness. (On dark days I sometimes wonder if I survived so I could be tortured some more.....I'm sure that wasn't really the reason Hope things get better for you soon, Michelle xx

Hi Sandi, I've had whooshing in my ears since SAH. Very regularly at first but it got less & less over the 1st year and now I get a surprise when it does appear. Enjoy the quiet while it lasts but always check with Dr if the sudden silence has worried you. Sure it will be a sign of things settling down (but obviously i'm not medically trained just going on my own experience). Michelle xx

Hi Suzie, I was told recently that the healthy cells around the cells affected by the bleed 'close down' to protect themselves and gradually re-awaken over time so hopefully the problems you have just now will improve as time goes on. Best wishes for your recovery, Michelle x

I am also a smoker so read this with much interest. I am annoyed that I continue to smoke but seem to be totally without common sense or will power....and in the early days the disappointment on my children's & families faces made me feel very guilty but also made me rebel and say I'd do what I like. I also think it's very hard to accept that you could've died and are continuing to do something that may have contributed to it - denial is always a good place to be. Skippy - I liked what your Dr said - 3%. My surgeon told me that stopping was the only way to give myself a chance! Janet - I asked a year or so back for the anti smoking drug (I forget it's name but it was the one before Champix?) I was told no way as it raises blood pressure - I kind of thought that in the long term it was better of 2 evils as smoking clearly does that too! I am going to go back & ask about Champix. I'd be really interested to know how you get on with it. (It might've been called Zyban????) Michelle x

Hi Fiona, I've had the same problem - there isn't a local Headway group (30 miles north, 80 miles west!!). I tried a local Different Strokes Group (for younger stroke victims) but most of them are a lot older. I know age doesn't matter in these things but I had hoped to meet people my age as sharing stuff on an age/family age helps. Look forward to hearing how things work out for you at headway. Maybe more groups need to be set up in a distance people can easily get to? I would go to that! (Or even help set one up if I could be of some use...) Michelle x

Hi Ronnie, Good to 'meet' you. I found this site very late on and have learnt more from it since I joined than I did in the 2 years till I found it! I'm sure you will find it a huge help too. Michelle x

Hi David, I think most people on here have had to go through the bit where friends, colleagues etc think you are ok because you look normal again, they can't see how you feel inside so are often unable to understand. It's good news that the Drs feel she won't have any more problems. Thank you for explaining how wrapping works, it's amazing what they can do! I wish her well for her continued recovery. Michelle

Hi Damian, I think most Stroke/SAH survivors go through this - it is such a massive life event to go through & very hard to accept how things have changed both physically & mentally. Life does become good again (if in a different way). Take care Michelle x

Hello ddson, That is an incredibly terrifying amount of anni's (I would spell it in full if I could remember how to!) Can I ask how your wife is recovering? I only have vague knowledge of coils - clipping & wrapping is unknown to me but I am really shocked at 12 annis. I was told that as I have 3 it is 'highly likely' this is a congenital defect & I am at high risk of developing more. Hope it is ok to ask what you & your wife have been told after they discovered 12? Wishing you both the very best of good luck, Michelle x

Hi Vivienne, Pleased to hear all is well anni-wise for you. All the small niggles are so scary after going through that and the wait for news is awfull:crazy: Hope you are feeling better soon. Michelle x

Thank you for all the lovely replies Michelle xx

Hi Cahrlotte-Anne, Wishing you lots of luck with your recovery. Michelle x

Thank you Karen. I've spent hours searching the net but hadn't come across this. I've registered through the link you posted - thank you. Michelle x

I If crying a river would make you feel strong, Believe me Honey, that wouldn't take long If taking my life would make you feel well, I'd tell all my loved ones to go to hell, If selling all that I own would bring back your health, there's nothing I own to equal that wealth, If I could hunt down the bullies for the taunts that you've had, my whole life's journey will be to make their lives bad. If I could thank all the people who are desperate you stay, their happiness I will always pray. Now they all know you are not thick, you are bright, I hope they still feel their behaviour was right. It's not just your peers, it's their parents too.... I'll say it for you Honey - SHAME ON YOU!!! hope it's ok to share this on here - might mean a lot to a lot of people, young or old... Michelle x

Jen, Fiona, Thank you. I have searched the web & posted on brain cyst (USA) forums - there is just nothing like this site. The brain injury support worker who has helped me since last year has tried to make contacts for me, no luck so far. I can't stop crying today, i'm totally broken up inside and would go through the SAH over & over again if it would make him better x

Hi, I know that the SAH thread does not cover my wee boys brain cyst but I'm finding it harder to cope with this than with my own 'brain failure'. He had his 1st follow up appointment today - despite my efforts - it's been like aftercare for my own illness - they fix you & send you home - then nothing! His neurosurgeon agreed today that his recovery has not been as good as expected, despite the shunt being fitted. I am trying to stay strong and be positive but I have never known fear like this even after I finally understood the severity of my own SAH. I could learn to accept a bad outcome for myself but really cannot deal with the fear of a bad outcome for my child. I have posted in the past that it must be so much worse for family to stand by & watch. I am now starting to understand the pain & fear that comes with this. I think that even without my own limitations this situation would be beyond what people are able to cope with. I'm sorry if this shouldn't be on this forum but maybe other carers could help me deal with it all. Michelle x

Hi Ann It's tiring enough just getting through the day without added stress. I had tests done by a neuro psycologist which highlighted what cognitive defects I had and the severity of them. Perhaps this is what your insurance company mean? It may be helpful for you know the results also. Good luck & don't let them get you down Michelle x

Aw Sandi, don't let that knock back belittle how things are for you now. I will be 3yrs post SAH in July. I never gave up & continued to try to work in the same job. I wasn't able to do the same level of work in support to management so did less. It has taken me 2yrs to understand that I can kind of do a lesser role as long as no-one interupts, no phone calls, no callers etc. I now realise that I cannot carry out an administrative role that suits management. My memory, thought processing & cognitive skills just do not work the same now. It took a nasty boss bullying me to make me see that I couldn't keep fighting to be as I was. I have been told recently that there's a circle of brain cells around where the bleed happened & damaged cells, that shuts down to preserve the surrounding healthy cells which is why the long term recovery may surprise you. My bleed was nearly 3yrs ago and this (apparently) means that the recovery time for the surrounding cells to 'wake up' again has passed. You are not that far on & things may keep improving for you. Don't give up hope yet! Lots of love, Michelle x

Hi Donna Marie, I have 3. I don't know the sizes of the 2 that were coiled when I had the bleed, except that they were large. I had the 3rd coiled 3 months later - i'm told it was small at 3mm. My bleed I believe was a grade 1 which I think is small (although classed a significant bleed?). If that was a small bleed I count myself very, very lucky as the effects have massively disrupted my life and obviously it would be far worse if it was a higher grade bleed? I'm not sure if the grade of bleed or the area it took place in is of most significance but would be grateful to hear from those who do know. Just for interest I was told that each coil (no idea how many in total) costs £6000, don't tell my kids, they'll dig them out for e-bay if the worst happens Best wishes, Michelle x

Congratulations Nessie! You did brilliantly to stand up in front of all those people and keep it together and explain your story so clearly. Like Karen, my memory would have let me down. I would have needed to read the whole speech out from the page. You were amazing - well done!! Michelle