ninja

Hi Laura As others have said you are not on your own. Prior to my SAH I used to go out at least three times a week staying out way after 11pm. I now go out in the evening once a month and struggle to stay out until 11pm in fact last New Years Eve I couldn't stick it after 10.30pm and went home, obviously Barbara my wife was upset leaving her friends and I wanted her to stay but she was very supportive and came with me. It is very miserable for her but we tend to go out in the day for meals etc. so we do have some sort of life but not as I would wish. I do encourage her to "doll up" when she goes out and so far I haven't really felt I would lose her. Not only is she looking after me but she has a 95 year old mother to care for as well so yes it is very difficult for her, perhaps shes the one in a million they talk about but I am sure you have nothing to worry about, speaking to someone on these social sites or chatrooms is just that "social", its a very few minorities who take it further. Cheers John

Hi Cal Had my SAH in 2005 and still feel tired during day. Most days I sleep in chair for one or two hours. The tiredness wore off for awhile but it has come back. Neuroligist didn''t think it was unusual. Cheers John

Hi Jan I had neck pain prior to SAH but after coiling it got worse. It also spread down my spine and leg. I was eventually referred to pain clinic where I had X Rays and scans and they put it down to arthritis. Eventually I saw a back specialist who commented on the fact that I had an SAH. When I had my routine appointment with the neurologist I asked him about my back and he told me that it was probably due to my SAH and did explain but to be honest I didn't understand, basically I am stuck with it apparently. When I go in for my second coiling I will no doubt ask for a further explanation. Cheers John

Hi Welcome to the site. I can relate to your story I was in and out of hospital for 3 weeks having been tested for meningitis and being told that the headache was due to my spondylosis. I was in fact discharged one day and actually drove when I later found out that the SAH was going on in my head. It was 3 weeks before they gave me a lumbar puncture and found blood in my spine. Like your husband my wife made so much fuss at the hospital to make them do something and we later received a verbal apology. My headache was constant for three weeks and I never want to go through that again so you have my deepest sympathy. One day I'll do a full account on this website but not yet my problems are still ongoing. Again welcome. Cheers John

Hi Thanks all youve put my mind at rest I thought my memory would get better at least thats what the neuro said but I think its getting worse. The strange thing is I can remember long numbers such as bank account, telephone numbers, addresses, passwords etc., yet ask me what I did yesterday and I haven't a clue. This tablet business however is serious so I have asked my wife to take over and remind me, trouble is I can't remember her name!!!! Cheers John

Hi All Just wondering if anyone experiences absent mindedness, forgetfulness and confusion. I am over 2 years from my coiling and have begun these new symptoms. My short term memory has been bad throughout but now I am starting to forget things. I have a strict tablet regime as I take strong painkillers (another ailment) but am starting to forget taking them. Yesterday I replied to a firm who did a job for me and sent me a questionaire, I sent the pre paid envelope but forgot to put the form inside, I could go on. Nothing serious at moment as when pain starts I then remember my tablets. Is this common??? Cheers John

Hi Nuriana I can relate to the sinus infection. I did have a problem prior to my SAH but it has increased threefold since SAH. The consultant did say he was going to operate before my SAH but has now put it off. I think he's frightened since my SAH so I use an inhaler. I think you know what I am going to say next and that is smoking definitely doesn't help, please try and give up again it causes so many problems, as you may be aware I am due to be recoiled and the main thing the neuro said was "Do I smoke?" I did many years ago but I'm too scared to now. As far as your sinuses are concerned I buy menthol sweets (I won't advertise but they're the strong ones) and they do give me temporary relief. I am also on a permanent antibiotic as I am prone to chest infections which cause a cough which also frightens me with regards to my coils. Cheers John

Hi there I had floaters in my eyes as a result of an assault I received from one of my old clients ( was part and parcel to my job unfortunately although retired some people don't forget). I was told by optician that I'm stuck with them but that they may ease. I am pleased to say they are very rarely a problem now. I used to wear contact lenses prior to my SAH but not any longer, my eyes are now too sensitive. I have had two eye tests since SAH and my eyesight has deterioated on both occasions but only minimally. Please don't worry about floaters they will either disappear or eventually you'll become unaware of them. Cheers John

Hi I used to drink regularly pre SAH, I would go out at least 3 times a week and put down a fair few pints of beer. Since my SAH I have tried to have a few pints but never got beyond one or two however the following day I would feel terrible. I tried shandy's but no different. I now do not drink any alcohol except at our 60th birthday party when I had one pint and just couldn' stomach any more so I'm leaving it alone permanently now. To be honest I'm now getting used to going out and drinking soft drinks, at least I can drive anywhere now and not fear the breathalyser. I normally drink diet coke but they say thats bad for you, can't win. After my SAH I was told I could drink in moderation but as I said I tried - no good. Surprising how much money you have but then I go and spend it on eating!!! Cheers John

Hi I was put on propranolol for anxiety some time ago but I was only told to take one when needed up to three a day. They had some effect but not a lot so sorry can't help much. Cheers John

Hi I am always eating and do crave for sweet things. My wife tries to monitor what I eat but she's going out tonight so I will have my usual Wednesday night bar of chocolate!!! One good thing for me is that since my SAH I cannot drink alcoholic drinks, no one has told me not to I just can't stomach them anymore and I used to drink a fair few pints prior to SAH perhaps the beer drinking cell in my brain has been damaged!!! There is a bright side in that I've got more money but I end up spending it on meals out. HEY!! we've got to have some pleasures in life. I am way overweight and do try but they always put those big bars of chocolate near the checkout!! Cheers John

Hi everybody After my fortnight of worry and concern I feel a lot better now. Has anybody out there had to have further coiling of their previously coiled aneurysm. Just wondering if the stay in hospital is the same, is it done under full anaesthetic as was the original or do they do it same as angiogram, do side effects return ie: exhaustion although I'm still getting that, is there a period of do's and dont's after procedure etc. Thanks all for your support during my fortnight of hell apparently I was a B!!%%!! to live with, if it hadn't been for my missus Barbara I would have been climbing up the wall. Booked a long weekend away in October knowing my luck they'll pick that week for me to go in. By the way Karen I asked you what was best charity to donate money received at our 60th, well we raised over £600 so we gave half to Headway and half to Prostate Cancer so I am pleased with that. Cheers All John

Hi All AT LAST we have got through to the radio neuroligist that actually did the original coiling, he answered the phone not the secretary. He said that I do need to be re coiled but because the aneursym is not bleeding as it was before I will go onto a waiting list as it is not urgent as he has to treat the bleeding one's first which I fully understand. At least I know something now but God it was hard work finding out so panic over I'll have to live with it until its done. Thanks everybody for your concern I believe the original doctor should not have used the word "dangerous" although I suppose it is but at least I can accept their reply, just have to wait now. Cheers John

Hi its me again Rang numerous times this morning phone either kept on ringing or answerphone. Barbara my wife pleaded over the answer phone for a reply. This afternoon no one had rung back so we tried again and eventually got through. She said that she has spoken to a doctor who has now spoken to the doctor who did embolization. She said that the doctor in charge of my problem (I won't name him) wants to see or speak to me direct and if I don't hear from him I should ring on Monday. I agree I should go to papers BUT I feel I should make waves AFTER I have been dealt with as I don't fancy lying in a hospital bed having complained about those who are tending my needs, I appreciate they have to give me proper care but it could be embarrassing. One problem that has arisen as a result of this is my blood pressure has gone up so am off to take it easy. Bye All John

Hi All Here we go! Rang this morning numerous times phone just kept on ringing not even an answerphone. Rang different telephone number at the hospital who gave us another number for secretary still phone just kept ringing, eventually we found that neurosurgery secretary was day off. Asked if she had an assistant and answer was "NO" and this is in a neurology department. No one has rung me from hospital today. My GP has rung me and between us we'll try tomorrow he was very concerned as obviously am I. Hopefully the letter which was waiting for signature at the hospital will arrive tomorrow but I'm not holding my breath. Other than standing outside neurosurgery with a placard I can do no more!!!! Cheers John

Hi Wife rung secretary again today as no one had rung. She said notes are still on his desk and that he was in surgery and she hasn't seen him. She told us she would get him to ring me direct, GUESS WHAT- HE HASN'T. We have left details with my GP's secretary. Apparently there is a letter for me waiting to be signed at the hospital. What a ****** system I was told about the gap in my original coiled aneurysm was dangerous a fortnight this Thursday!!!! Never mind its good character building and tomorrow is another day. When its all over I'll have a good "My Story" to tell from the original misdiagnosis to the present day. Cheers John :? :? :?

Hi I have suffered with spondylosis in my neck and upper back but recently I have been treated by the Pain Clinic for pain in my lower back, waist and weakness in my legs which I thought was arthritis but apparently I am now told that it is probably due to my aneurysm. It was explained to me but to be honest I couldn' take it in, I to like Karen take a folding stick with me as my problem is when I stand still my legs appear to give way and I use the stick for support. Cheers John

Hi All Thanks for your comments. Yet a further update, my wife rang this morning (Monday) and was told by secretary that doctor was on his rounds and that she would speak to him when he finished. Barbara my wife said she would ring back and secretary told her she would ring when she knew anything. No phone call has been received and secretary finished at 2.30pm so another day has passed. Obviously we are going to pressurise them tomorrow and involve my GP. Will keep you informed. Cheers John

Hi All With reference to the gap that has appeared in my coiled aneursym. We haven't heard anything so my wife Barbara phoned the secretary at the Heath Hospital, Cardiff and was told that a decision hasn't been made as the surgeon who did the coiling is on holiday until Monday so she is putting my file on top of the pile I am a little amazed by this as I had the angiogram weeks ago. As you can appreciate after being told by the doctor with whom I had an appointment a week last Thursday that it was dangerous to leave I am to say the least stressed out. We have told my GP and between us we shall be pushing them on Monday. In the meantime I have been told to take it easy, not to bend, not to lift anything heavy and NOT TO GET STRESSED!!!! At least the weather has changed for the better. Just one other query if they decide to monitor it and not recoil what do they in fact do? Cheers John

Hi All Thanks for your replies its nice to know someone is thinking about you. I agree its more stressful having to wait then having coiling or whatever done. We are going to give it to the end of the week and if no answer we'll start pushing will keep you all informed. My best wishes to you All John

Hi All Well I've had my appointment but not much the wiser. I was told that my coiled aneurysm had formed a neck leaving a large space without coils and was told if it is left alone it could be dangerous so I should have another embolization but he wouldn't make a decision as he needed to speak to the neuroligist or the neuro radiologist who did the original coiling who was in surgery, he said he would ring me. About 2 hours later he rung me and said that they would get together and study my scans and make a decsion whether to recoil or watch and monitor and either ring me or tell my GP so I have got to sweat and wait!!! In the meantime he told me not to lift, bend or basically do anything physical and to relax, God knows for how long. Cheers John

Hi Thanks all its not today I've got appointment but next Thursday day before party. I don't drink since SAH but I think I'll have a couple whatever the news is. Will let u know. Cheers John

Hi All Exhaustion has reared its ugly head again. I am two and a half years post coiling and thought that exhaustion was a thing of the past as I had not felt that way for months but over the last four or five weeks it has come back with a vengeance and I need to sleep every afternoon. When I say exhausted I mean I am completely and utterly knackered. I am due to see the neurologist a week Friday so no doubt this will be discussed, my GP has already told me that he's received a report from him which states that there is a possibility that I may have another unruptured aneurysm and also my coils may have "migrated", happy days are here again just as I was feeling a lot better. Still just watched Welsh news and summer appears to be coming this weekend and the following weekend I am celebrating my wife and my 60th birthday and we are having a bit of a bash (I am not sixty till December but can't afford 2 parties, its nice being a toyboy). Will update you all when I know score. Cheers John

Hi All This is a new one on me. I have suffered with back problems for many years (youre starting to think whats this got to do with brain aneurysms, is he on the wrong site). Well I am attending a pain clinic and see a back specialist and in fact saw him yesterday. He asked me if the pain in my spine had increased since my SAH and I answered yes as it has considerably got worse over the last 2 years. The doctor did not seem surprised and told me there probably was a connection. He wants to see me in about 6 weeks and will discuss it further. I also told him that my fatigue had got worse and again he was not surprised as not only does SAH cause fatigue but so does arthritis and other similar maladies. I would be interested if any of you have medical problems which have worsened since their aneursyms as I was quite surprised when I was told this. Cheers for now A thoroughly miserable John

Hi there A BIG YES to that. Many people I classed as friends no longer want to know. If I go out for a drink (non alcoholic) and want to go home because I am tired I become a miserable b!!!!r to them. If I walk too slow (I also have arthritis) I'm not trying or I get the words "Come on John its nearly three years now". I could go on. If I try and tell people what I am or have been going through I get the "bored stiff" look. Even good friends that I have kept lose their patience. I now put it down to their ignorance and try and get on with my life after all they don't know what they've got in front of them. Cheers John