ninja

Hi everybody I haven't been on here for months but still ticking over. As I spend lots of my time at home I tend to watch soaps with my wife. I noticed that Cain Dingle suffered a ruptured aneurysm and after some persuading had a procedure which I think was coiling but then a miracle happened the very next day he is back on the farm as if nothing had happened. Some people really believe this, I am eight years post coiling and am still not recovered. If anybody knows Cain's neuro surgeon please tell me. I think these producers should research a little more as the general public can be gullible and believe that we have had some minor problem requiring day surgery and discharged - I wish !!! V Cheers John

Hi everybody Its been a long time since I posted on here. Basically down to laziness and various ailments. Its now nearly eight years since my original embolization and many of you will remember that I had problems with the neurology department who stated that my coiled aneurysm had developed a neck and may have to be further embolized and was dangerous to leave but nothing ever happened. Well yesterday after a further scan my GP received a letter from Neurology at the Heath Hospital in Cardiff that the neurosurgeon and neuroradiologist have now decided that I should have a further embolization as the neck has grown bigger. I know if I look through the posts that my questions will be answered but its so long since I`ve been on that it will take ages. So can someone please tell me 1. How long are you in hospital 2. Is it exactly the same as original procedure 3. When I spoke to consultant he was surprised that we were worried 4. Are you anaesthised as in original procedure or is it similar to tha angiogram when you are awake 5. Is there a convalescent period or can you carry on with life Any advice would be helpful

Hi All<br> Haven't been on for ages but this subject has stirred me up once again and I must once again reply in the hope that non contributors may read this. I suffered a stroke 25 years ago and an SAH 6 years ago and the things that have been said to me from so called good friends and other persons still disgusts me.<br> Examples are, " John how long is this ****** stroke going to last ", " Throw away that walking stick for God's sake " ( I suffer from spinal arthritis ), " Don't be so miserable and get a life " ( said to me because I couldn't go out boozing ), " You must be alright you can drive a car ","You could do with losing some weight why don't you go for a walk up the Sugar Loaf (a local mountain) and many more. I appreciate many of these are said in jest but as many of you know they can still hurt. I have come to the opinion that people who say these distressing things are not really friends.<br> The very people who I thought wouldn't care or help us were the very ones that did and still do. Also I had an acquaintance who I used to think was boring and someone I didn't really relate to who became a very good friend who frequently rings me, helps me with chores I am unable to do and together with his partner frequently meets us for coffee and joins us at many social events, how wrong you can be of over some people.<br> I have found an answer now and hope this may help some of you. In our area (Monmouthshire) and I believe in other parts of Wales we have a scheme called Fit 4 Life which is where basically your GP, Physio, Nurse or Dietician refer you to a gym at the local leisure centre where you undergo a Fitness Assessment for a month (2 days a week) and then go on to regular gym sessions. I found the gym sessions helpful but moreso was the friends I have made with people with all sorts of disabilities and ailments. After my SAH I was very nervous of meeting new people which was totally against my usual personality having been a serving police officer who came into contact with people from all walks of life. I have now met a different circle of people with different interests who I meet 3 or 4 times a week at the gym and at other times socially and find this a great help.<br>Its taken a long time but now I know who my real friends are.<br><br>Cheers<br>John

Hi Congratulations Louise what an achievement not only for you but it gives all of us something to look forward to. Its a terrible shame about your memories of your Mum and Dad, fortunately I can remember mine but I have little recollection of my childhood and trying through various means to remedy that but not doing very well. Well done and keeping on adding the years Cheers John

Hi Juliette I am now 5 years post coiling and still suffer if I overdo things. I start to get headaches, am unsteady on my feet, irritable, bad tempered and get very tired. I do try to do as my body tells me which quite frequently is to rest but I have a tendency to ignore it and suffer for it. Only yesterday we went shopping and intended just to go to Marks and Spencers ( you'll know where - Cwmbran ) we met friends and walked a lot further than I intended and I am at this very moment reclined in a chair still feeling the effects. So the moral of the story is as many will say " Do as your body tells you" Please take care and take it easy. Cheers John

Hi Donna Thanks for that I'll have to find out how to do that. Cheers John

Hi again Lynne You definitely know where I'm coming from. I'm going off topic a little but due to my aneurysm and other problems I am in receipt of certain benefits thanks to CAB and have to reapply early 2012. When you read certain articles in paper it aggravates your concerns but I tend to switch off now. Never mind perhaps the X Factor will cheer me up:-D:-D now I'm really sad still the missus likes it!!! Cheers John

Cheers Sandi Now edited Bye

Hi . Yes Lynne I agree with your comments about the Mail, I just wish these reporters would get their facts right but they seem to get away with it and cause frustration and worry at the same time. I can bet you now that there will be somebody I know will comment on this article saying words to the effect " There you are you can't be that bad look at that woman in the Mail " I hope I'm in a good mood that day, needless to say the paper is in the bin. Cheers John

Hi All I refer you all to an article in today's Sunday Mail dated 30.10.11. in the Review Supplement headed "The tiny coil of wire that saves thousands from a stroke It gave me the impression that coiling was just a walk in the park and the lady states " The pain just went I felt tired and needed a week in bed, but after that I was fine" she also states that she has been given the all clear and her health is back on track Did I have the same proocedure because after five years I am in no way " back on track" nor would it seem are many of us on BTG. I don't think the lady concerned intended to leave that impression but if I were someone looking in from the outside having an aneurysm and then being coiled is no worse than having a bad tooth removed. I am glad I've got that off my chest and one last query is a ruptured aneursym a " stroke" as stated in the title ? Cheers A rather upset John Apologies to overseas members I do not know how to hyperlink article

RESULT As a result of e mailing and talking to the Concerns Manager she contacted the neuros secretary who told me my appointment would now be in December 2011. I again made my views known and lo and behold the registrar rang me and gave me the result over the phone which was relatively good so at least my mind has been put to rest for now. It does seem so unfair that all those with appointments after me now take over and I go back to the end but thats the way it goes. The Concerns Manager(never heard of that job before ) assures me she will be looking into this. Cheers John

Hi All Just a little story. Last year I had a follow up appointment with the neuro on Thursday 9th September 2010 for the result of my scan. At about 2pm the day before I received a telephone call from the hospital that my appointment was cancelled as my consultant had to go to a meeting.This appointment was re-arranged for Thursday 10th February 2011 a further five months. On that day I received my next appointment for Thursday 8th September 2011 for the result of my next scan which I had in August 2011. UNBELIEVABLY Yesterday Wednesday 7th September 2011 at 2pm I received a phone call from the hospital that this appointment has been cancelled because my consultant had to go to a meeting and I was told that my next appointment wouldn't probably be until December 2011. As you probably realise I went ballistic and have conacted the complaints manager at the hospital. TWO QUESTIONS 1. Is it not strange that both appointments were cancelled exactly a year apart to the day at the same time with the same excuse. 2. Why could I not see another doctor in the team as I have always done in the past (I have never been seen by the consultant since my coiling so why should his meeting affect my appointment). I was stressed out before this so you can imagine how I feel now. At least I've got it offf my chest by burdening you all with the story ( Oh how I wish it was just a story!!!) Comments would be appreciated. Cheers John

Hi All Just a quick one. I am due the results of my scan in just over a week and recently I have been experiencing the feeling that I am wearing a hat when in fact I'm not. I have read in previous posts that some of you experience strange feelings just wondering if this is one of them. I am 5 years post coiling and will be discussing this with my neuro. Cheers John

Hi Janet As others have said you should be able to see another doctor on the day you ring. I was told after my coiling by my own GP that if I felt that unwell and was unable to see a GP to go straight to Accident and Emergency, this I did on two occasions because I was worried just like you. I was told everything was OK and that it was early days, at no time did they say I was panicking and were very helpful. Although you are experiencing these problems which is normal you should get checked out. Chin Up Regards John

Hi Great news got my scan tomorrow (yes Saturday) hope your luck comes my way. Cheers John

Hi All When I was being taken to the HDU after coiling apparently I started fighting with the porters in the lift because I wanted to go the loo, apparently they had difficulty controlling me (after a general anaesthetic!!!). On arrival at the HDU I then accused the sister of standing on my catheter and was quite rude. By the time my wife came I was eating a cheese sandwich and can't remember any of it. I still feel sorry for the porters I'm a big bloke. Cheers John

Hi Jen Thanks for the info I found it very helpful especially as I have been suffering more fatigue than normal lately. Fatigue is one of the main reasons I lost so called "friends. Cheers John

Hi Riane I agree totally with you. I expressed my feelings hoping that perhaps someone of medical experience "may" read our entries and may possibly stir up some action. There is an advert on our TV in UK that publicises the effects of a stroke and it tells people what to do at the time but there is very little ever shown regarding SAH's. I am fully prepared to discuss with whoever takes an interest. As I am now 5 years post SAH I get the distinct feeling that people think I am back to 100% fitness, if only that were true. I have replied to a couple of surveys on this site from graduates etc.so you never know someone maybe "out there". Cheers John

Hi All I'm back to an old subject of mine regarding "friends". I am now 5 years post coiling and am awaiting another scan next month and may need more coiling. Throughout this period I have been amazed as to the attitude of some people including so called good friends. During the period just after coiling I was deserted by many because I did not want to go out or when out I wanted to go home as I was exhausted. Many people became bored with this and basically lost patience with me, however I still had good friends who supported me. My problem is now that I am 5 years on even these "friends" are becoming distant. About 2 months ago I caught a virus as did my wife and at the time we were due to go to a 60th birthday party, we felt too ill to go and told the friend that we were sorry, handed over a £23 bottle of whisky and left. Since then they have become distant, have not been in contact with us nor really thanked us for the gift. At the time my GP had told me that due to me having an aneurysm many ailments I would get would be worse due to this I believe they probably heard we were shopping in town and therefore could have gone to the party both I and my GP knew this was impossible. A second instance arose when I saw a good friend in town when I was using a walking stick due to arthritis and my balance being affected again due to my aneurysm, He said "Come on John throw away that ****** stick you don't need it you look fine", probably said as a joke but nevertheless it hurts. I believe that the public in general should be made more aware of the effects of a SAH on a person as they are regarding strokes which at the moment are subject to an advertising campaign on TV. I do carry a card with me to explain to people the possible side effects I am experiencing but is impractical to show it to all those who do not understand. Sorry for this rant but its a subject I feel very strongly about and I really feel there should be more publicity widely available as I feel I am slowly becoming an outcast through no fault of my own. I do accept I am a miserable, depressing and sometimes an aggressive old *** but it really is not of my choosing. Cheers All John :frown:

Hi Everybody Thanks for all the replies at least its put my mind at rest. I go to the gym twice a week and also swim but when I finish I feel OK but if I read a book or newspaper I'm gone in about five minutes. Also I find if I sleep during the day I feel totally "not with it" when I wake up yet when I wake up from a night's sleep I'm ready to go. I also agree about GPs. Mine is marvellous but he is unable to say while I feel so tired, he just says its the brain's way of recovering which I suppose is a good answer. As I said previously I'm due my next scan in August and see neuro in September so hopefully some questions will be answered. Cheers John

Hi All Been to see my GP and basically the diagnosis is due to the fact that I caught a virus weeks ago it has aggravated other conditions that I have ie:- spinal arthritis and SAH. He told me that it will take longer for the bug to leave me and the tiredness,aches and pains are part of the condition. He tells me that it will wear off in time and to pace myself. It is slowly easing off thank goodness but I have really never felt so exhausted. I am due to see neuro in September and will also mention it to him but basically I am led to believe that if you have had an SAH many illnesses that people suffer with can be a lot worse for us. One thing for sure whoever gave me the virus PLEASE KEEP AWAY FROM ME!!!:devil: Cheers John

Hi there I'm 5 years post coiling and yes I do get vice like headaches which last seconds and are not severe, sometimes at the rear of my head or above my eyes. I have been going to a "Gentle Exercise"gym recently which I think aggravates them. I have seen my GP who advises me to "pace myself" but doesn't seem to be too worried. I would go and see my GP for reassurance You are not on your own thinking is something happening I think we all do that. Cheers John.

Hi All Been to my GP and basically he told me to pace myself. I did or still have a virus which is doing the rounds of my area and my GP told me that due to the fact I've had an SAH will make me feel worse and take longer to recover. He wasn't surprised when I told him I was so exhausted and rest is the only answer. My wife had the same virus at the same time but fortunately it has now left her so as we all know SAH's don't come on their own. Cheers John

Hi Everybody I am now 5 years post coiling and am now experiencing extreme tiredness worse than I have ever had. I was just wondering if anyone else has had this so far along the path to recovery. At the moment everything I try to do is an effort, I just want to sit or lie down most of the time. I am seeing my neuro in September after I have had a further scan and I'm also off to see my GP soon but just wondering if anyone else experiences this. Cheers John

Hi All Just wondering as I am sat here with a wheezy chest, heavy cold and feeling particularly miserable. Has anyone since SAH suffered fainting episodes after a bout of heavy coughing. I have experienced tingling sensations followed by fainting. I have mentioned this to my GP before and he has said this can happen to anyone and once you have fainted the coughing stops which is true but I find it very frightening, anybody else experienced same? Apparently it is more common in overweight persons of which I am one. Cheers John