robertpowrie Posted August 15, 2011 Share Posted August 15, 2011 (edited) Hi all, I came across the Behind the Gray website by accident when I was googling endovascular coiling. It's great that there is a support group for SAH sufferers. I am still recovering from an SAH which happened in February this year and have recently returned to work full-time. This was my second SAH. My history is - In April 1994 one of my three sisters died of an SAH aged 32. At the time I was working in Oxford and I suffered my first SAH in October 1994. This required intracranial surgery and the aneurysm was clipped. The rest of my family all had angiograms and one of my other sisters was found to have an aneurysm as well. She had this coiled which was still in the clinical trail phase at the time. My other sister was clear. All has been well since then until February 2011. My youngest son aged 9 (bless him) found me unconcious in the toilet after I had suffered another SAH. No warning at all. My wife and other son were out at the time so my youngest ran to the next door neighbours who came and phoned for an amulance. I was taken through to the Western General Hospital in Edinburgh where I had the aneurysm coiled. Great hospital and great staff who really looked after me. Took me a few weeks to get back on feet but hopefully everything is okay now. I have had an angiogram recently which showed some slight compaction of the coils and I may have to get more coils put in. I should find out this week if this is the case. Still get very emotional at times thinking about it all. I was wondering if anyone else has had such a family experience of aneurysms? To me it looks as if it was a genetic cause. Three out of four of my family all have had aneurysms. It has been suggested by the neurosurgeons that my children should get scanned when they are older and nearer adulthood. Thanks for listening Robert Powrie Edited August 15, 2011 by robertpowrie Quote Link to comment Share on other sites More sharing options...
Louise Posted August 15, 2011 Share Posted August 15, 2011 Hi Robert Warm welcome to the site.... Im on the East coast of Scotland. take it you mean Edinburgh Western General wards 31, 32, 33 know them well, actually they've changed quite a bit since I was there...... As far as Im aware no-one in my family except me has had a SAH.....sorry cant help. take care Quote Link to comment Share on other sites More sharing options...
Winb143 Posted August 15, 2011 Share Posted August 15, 2011 Hi Robert I have had SAH, ..was out of it for approx a year...what with Sepsis and Ventriculitus ...glad I had shunt fitted ..living in the real world now.. My Dads sister had brain op...but all my family said her hubby had hit her on the head..Nice Family..lol She might of had SAH ? but just passed out, all she remembered was turning on lights.She was never the same and I don't know if it was SAH, I was only young in fact too young to remember....she had a dent in her temple area?? Good luck Regards WinB143 x Sorry I cannot be of help Quote Link to comment Share on other sites More sharing options...
robertpowrie Posted August 15, 2011 Author Share Posted August 15, 2011 Hi Robert Warm welcome to the site.... Im on the East coast of Scotland. take it you mean Edinburgh Western General wards 31, 32, 33 know them well, actually they've changed quite a bit since I was there...... As far as Im aware no-one in my family except me has had a SAH.....sorry cant help. take care Hi Louise, Thanks for your reply and yeah I did mean Western General Hospital in Edinburgh. Can't really remember which ward I was in. I've edited my post and corrected it now. I'm now living in Blairgowrie and am an outpatient with the neurosurgery department at Ninewell's Hospital. Thanks again and take care yourself Quote Link to comment Share on other sites More sharing options...
SarahLou Posted August 15, 2011 Share Posted August 15, 2011 Hi Robert, Welcome to BTG. Gosh,you and your family have been through so much. SAH does not run through my family (that I know of yet, fingers crossed, I pray it doesn't ) so sorry, can't help with that question but wanted to welcome you to this wonderful site. It's been a godsend to me. I wish you well with your recovery. SarahLou Xx Quote Link to comment Share on other sites More sharing options...
goldfish.girl Posted August 15, 2011 Share Posted August 15, 2011 Hi Robert, How awful to go through a 2nd SAH, I don't think I could stand to go through it all again. It seems so unfair that you have had to & I hope you are recovering well. I was in Edinburgh Western General too & also thought the staff were great! The only other known person with an aneurysm in my family was my mums sister. Other than her & myself, no-one else is aware of having any. My older son (21) has been offered screening but has chosen to leave it for now & maybe think again when he reaches 30. My younger boy (10) had a brain op earlier this year but it was to treat a sub arachnoid cyst that had swollen and caused serious problems. I am told these conditions are unrelated. Best wishes Michelle Quote Link to comment Share on other sites More sharing options...
winter Posted August 15, 2011 Share Posted August 15, 2011 Hi robert! Welcome to BTG Sorry to hear you're having to deal with this again, wow! Once is bad enough - your feelings are certainly understandable! My neurologist told me my 2 adult children should have scans, just to be on the safe side. I have no known family members that've had SAHs but was told it can be genetic. I was also told my aneurysm was probably there since birth - I also have a hypoplastic artery in the brain, which could have caused the aneurysm in the other artery to eventually burst, since that artery had to work harder to get the blood through. Good luck to you and glad you found us here! Hope to hear more from you, Carolyn Quote Link to comment Share on other sites More sharing options...
Liz D Posted August 15, 2011 Share Posted August 15, 2011 Hi Robert Welcome to BTG. I too had my coiling op at the Western General , Edinburgh and the staff were wonderful. I have 5 siblings, one sister has been checked and is clear and one sister is waiting on a scan. My other siblings don't want to be scanned. My paternal grandfather died from a SAH and I have two cousins who have had SAHs. Sadly one died. My cousin that survived her SAH and had 2 aneurysms lives in Canada and her daughter has been scanned and is clear. She will have a scan every 5 years. 2 of my other cousin's children have been scanned, one is clear and one has a small aneurysm that doesn't need treatment at the moment. The one that is clear has been told there is no need for any more scans. It's interesting the difference of opinion in the two countries. My 3 children have been advised to have a scan but have been told this won't happen until they are 30. At the moment they want to be scanned (although they may change their minds) but they are 24, 22 and 20. I do worry about them, especially the youngest as he suffers from severe headaches the way I used to. But at least they know that they should lead as healthy a lifestyle as possible and that they certainly shouldn't smoke! Quote Link to comment Share on other sites More sharing options...
Bandicoot Posted August 15, 2011 Share Posted August 15, 2011 Hello Robert I am sorry you have had a second SAH, it must be such a blow to you. I do wish you well in your recovery and hope you are able to manage work and family commitments too. My family appears to have a SAH pattern too. My dad had 2 aneurysms rupture simultaneously (as I have been told) when he was in his late 20s. He survived against all odds. His sister and his aunt also experienced SAH and died immediately when they were in their late 20s. I had my SAH (which was clipped) at 52 (2 years ago). I have suggested to my siblings and 30 year old daughter to have a scan by providing information, encouragement and a bit of harassment. I will turn the heat up again on them soon on this issue. It makes me a bit nervous and concerned for you to hear that you have to go through this a second time, and wonder how often we should be scanned if there is a familial pattern? I ditched my GP who told me I didn't need a scan earlier this year, 18 months after SAH. He had recently been to a conference where he heard that scanning was only required every 5 years. I told him I was having one because my neurologist had advised this. I don't know when to have another scan and will have to find this out. Take it easy Robert, a second SAH is enormous thing to go through. Hope to hear more from you on your recovery journey. Tracy Quote Link to comment Share on other sites More sharing options...
jess Posted August 15, 2011 Share Posted August 15, 2011 Hi Robert glad you found us sorry you needed to. Also very sorry you had a second sah one is bad enough. Look forward to chatting soon listen to your body rest when it tells you too and drink plenty of water. Jess.xxx Quote Link to comment Share on other sites More sharing options...
kempse Posted August 15, 2011 Share Posted August 15, 2011 Hi Robert and welcome to this site. To have gone through two sahs is very unfortunate to say the least. I wondered if your second aneursym had been discovered and monitored after the first rupture or whether the rupture of it was the first you knew it was even there. I have an untreated, unruptured aneurysm so it's always at the back of my mind that I could suffer a second sah, although I am putting my trust in those who are checking it annually. I am currently waiting the results of a recent MRI scan. The only family history that I am aware of in my family is that my Mum's Dad died of a sah in later life, but my Mum is not sure whether it was caused by an aneursym or not. You obviously have a wonderful son there whose actions were something he should be very proud of. I know my own son, when he was nine (he was 11, 2 days ago), was the only one present when his uncle had his first and only seizure. That was in the middle of a field and he had to run over half a mile to get my sister who then got an ambulance. I think they both deserve a medal! I'm not sure if you have heard whether you will need more coiling yet, but I remember being particularly emotional around the time when I found out I needed more coils put in. My only regret was that I hadn't discovered this forum at that time - I think if I had, it would have made that part of the journey so much easier. I wish you all the best in your continued recovery. Sarah Quote Link to comment Share on other sites More sharing options...
robertpowrie Posted August 21, 2011 Author Share Posted August 21, 2011 Dear Everyone, Thanks so much for your kind and caring replies so far. Will be in touch with so many people after their caring replies. Had an appointment with the neurosurgeon on Thursday and it has been agreed that I will go to get more coil(s) inserted into the aneurysm in the near future. May have to get a stent inserted before they do the coiling. Got the choice whether I want to go through with it or not but have decided to go with it. Don't want a 3rd SAH. The risks of the operation outweighs the risks of not having it done. Just waiting to hear from the Western General in Edinburgh when I will be booked in. Quote Link to comment Share on other sites More sharing options...
goldfish.girl Posted August 21, 2011 Share Posted August 21, 2011 Good luck Robert. I had a 2nd elective coiling too & coming round from it is so much easier than coming round from emergency op. Look forward to hearing how well you are after it's over. Best wishes, Michelle x Quote Link to comment Share on other sites More sharing options...
sallym25 Posted August 21, 2011 Share Posted August 21, 2011 Hello Robert, Welcome to BTG. As michelle says, we will look forward to hearing you're doing well after your op. Be sure to keep us updated. Sorry to hear you've already had to have 2 in the past. I'm not sure I could have dealt with all you've had to endure. Can you tell us how you felt regarding the difference between the clipping aftermath and the coiling one? I am interested to hear how this was for you. I myself had a clipping and am struggling coming to terms with not being able to do all I could. I'm not allowed to drive yet and am wondering if I am possibly still in denial. Though I don't hate my new way of life just so much now. Hope you are feeling good today and can prepare yourself well for the forthcoming events. Sally xx Quote Link to comment Share on other sites More sharing options...
sonia Posted August 24, 2011 Share Posted August 24, 2011 Hi Robert, So pleased you have found this site. I hope you feel that you will always have someone to chat things over with. I am sure with all you and your family have had to get through, they will now keep any eye on you all. I remember being in Ninewells so well, I loved the place. I was there for a differant reasons. Both my two Son's were born there, so I have very happy memories of days spent in the area. Loved St Andrew's. Take care to you and your family Robert. Love Sonia xxxxx Quote Link to comment Share on other sites More sharing options...
robertpowrie Posted August 24, 2011 Author Share Posted August 24, 2011 Hi everyone, Just wondering which is the best way to reply to the kind people who have sent really nice replies to my post. Is it better to reply to thread or to send seperate messages. If I reply through the thread do the members get a notice that I've replied to them or do they have to go back into the post to see? Just want to reply individually to so many kind remarks and questions Thanks Robert Powrie Quote Link to comment Share on other sites More sharing options...
Karen Posted August 25, 2011 Share Posted August 25, 2011 Hi Robert, A warm welcome to you! If you want to reply to everyone, then feel free to post underneath. Most members who have responded to you are regulars on these message boards, so they will pick up your reply. When they log on, most members will click on New Posts and it will give them a list of any new posts on the message boards or alternatively, you can use the private message system, especially if you think that your conversation is going to go "off topic". Hope that all makes sense! Quote Link to comment Share on other sites More sharing options...
robertpowrie Posted November 2, 2011 Author Share Posted November 2, 2011 Finally got a date for more endovascular coiling. I have been booked into the Western General in Edinburgh for the 23rd November. They are wanting to try and insert at least one more coil into the aneurysm to fully block it off. From my last angiogram they could see that the coils they had put in in February have compacted a bit and have left a little space at the neck of the aneurysm. This could maybe swell again in the future so they want to totally fill the aneurysm. May require a stent to be put in as well. Not really looking forward to it, especially when they go on about the percentage risks involved. But would rather go through with it so I don't have to worry about having another SAH in the future. I will let everyone know how it goes. Again thanks to everyone for their kind words and support. xxx Quote Link to comment Share on other sites More sharing options...
goldfish.girl Posted November 2, 2011 Share Posted November 2, 2011 Hi Robert, That's good news that you have a date for your op - not long to wait, although I'm sure it will seem long to you. When I was going for my second op I found it helped to focus on how good it would be to wake up afterwards knowing that the constant worry of having another bleed was over instead of focussing on the op itself. I know it's a very worrying time when you are waiting but the relief afterwards will be great. I hope this helps & look forward to your post letting us know the op is over & you feel so much happier! Good luck & best wishes Michelle Quote Link to comment Share on other sites More sharing options...
Louise Posted November 2, 2011 Share Posted November 2, 2011 Hi Robert yes not long to wait now. Sadly they have to give us the gloom info its law tho shame the powers dont know 'we dont wanna know that stuff' Good way to focus Michelle Quote Link to comment Share on other sites More sharing options...
Karen Posted November 2, 2011 Share Posted November 2, 2011 Wishing you all the very best for your coiling on the 23rd Robert ...I have a neck left on my aneurysm which still concerns me, so know how you feel. xx Quote Link to comment Share on other sites More sharing options...
robertpowrie Posted November 2, 2011 Author Share Posted November 2, 2011 Hi Robert,That's good news that you have a date for your op - not long to wait, although I'm sure it will seem long to you. When I was going for my second op I found it helped to focus on how good it would be to wake up afterwards knowing that the constant worry of having another bleed was over instead of focussing on the op itself. I know it's a very worrying time when you are waiting but the relief afterwards will be great. I hope this helps & look forward to your post letting us know the op is over & you feel so much happier! Good luck & best wishes Michelle Hi Michelle, Thanks for the good advice. You're right I should concentrate more on the positive outcome. Will be good not to have to worry about another SAH. Thanks again I'll let you know how it goes Robert P Quote Link to comment Share on other sites More sharing options...
robertpowrie Posted November 2, 2011 Author Share Posted November 2, 2011 Wishing you all the very best for your coiling on the 23rd Robert ...I have a neck left on my aneurysm which still concerns me, so know how you feel. xx Hi Karen, Thanks for the best wishes. I'm sure it will all be okay. When I was talking to the neurosurgeon he said the aneurysm is fine at the moment, but because I seem to have a tendancy to haemorrhage he just wants it sorted for the future. I did have to laugh at the neuroradiologist from Edinburgh who said and I quote "It looks a bit challenging, but I think I can do it!" I'll let everyone know how it goes Thanks again Robert P. Quote Link to comment Share on other sites More sharing options...
Karen Posted November 2, 2011 Share Posted November 2, 2011 "It looks a bit challenging, but I think I can do it!" Hi Robert, Blimey, the medics really know how to put your mind at ease, don't they?! I'm sure that all will be fine and it will hopefully give you some peace of mind too .... my next scan isn't until 2015, which by that time, I'll be 10 years post coiling. All the very best to you...xx Quote Link to comment Share on other sites More sharing options...
robertpowrie Posted November 2, 2011 Author Share Posted November 2, 2011 Hi Robertyes not long to wait now. Sadly they have to give us the gloom info its law tho shame the powers dont know 'we dont wanna know that stuff' Good way to focus Michelle Hi Louise, Thanks for the comments. You are right. We don't really want to know the statistics. Read you're post earlier on today and you should be so proud of yourself for all that you have been through over the last 12 years. Although you maybe don't always feel it, you are such a strong person and still seem to have a good sense of humour after it all. Be proud of yourself. xxx Thanks Robert P. PS - There seems to be an awful lot of Scottish people on Behind the Grey. Quote Link to comment Share on other sites More sharing options...
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