ninja Posted January 25, 2008 Share Posted January 25, 2008 Hi I said I would let you all know the result of my appointment after MRI scan. Apparently they have found a spur on the neck of the aneurysm thats what I think he said, think I'll take a recorder with me next time. The neurologist is having a meeting today and is discussing the result and I may have to have another angiogram and possibly recoiling. He also said they may do nothing so I'm not really much wiser just still worried. I am supposed to be called for no later than 3 months but he said it maybe couple of weeks. I queried the headaches and exhaustion and was told to avoid stress and basically do what my body tells me ie:- if I'm tired stop what I'm doing and rest and not overdo it. He also said I was very lucky as 50% of patients don't make it to hospital and those that do become severley disabled so at the end of the day I (We) are very lucky. Will keep you updated. Cheers John Quote Link to comment Share on other sites More sharing options...
ninja Posted January 25, 2008 Author Share Posted January 25, 2008 Sorry When I said those that make hospital become severley disabled I meant 20 to 30% not all. John Quote Link to comment Share on other sites More sharing options...
stephen Posted January 25, 2008 Share Posted January 25, 2008 Hi John I would try and take someone with me to appointments. I hope all goes well. Keep in touch. Quote Link to comment Share on other sites More sharing options...
Karen Posted January 25, 2008 Share Posted January 25, 2008 Hi John, It's quite hard to take in the information, when the medics are talking to you ..... I'm the same.... It's probably the shock of hearing something, that you really don't want to hear.... All, I can say, is that I still have a neck left on my annie ...... I'm due to be re-scanned this year ..... I must admit, that I would probably find it a relief, to be told that I need more coils and get the op out of the way. I've found it hard living with the fear of it bursting again (this would be my third time if it happened again) more than anything and it's taken me quite a while to come to terms with it. However, I'm going through a really good patch of recovery and mentally, I'm in quite a good place ...... I've dipped in and out of depression, more times than I care to think about.... mainly through worry.... At 2.6 years on, this is probably the first time, that I can honestly say, that I've started to feel more comfortable or I'm coming to terms with what's happened or could happen ..... I don't worry half as much and have begun to start on the road .... "what will be, will be" ...... I seemed to have wasted a lot of my time worrying about what could happen .... but at this moment it hasn't ..... I'm hoping that this year, I shall live life for the moment, rather than thinking about what's going on in my brain... For me personally, it's taken me quite a bit of time to come to terms with things ..... I can also see that I've wasted a lot of my time with worrying and that's stopped me doing certain things and caused me endless amounts of anxiety to cope with. Wishing you the very best....xx Quote Link to comment Share on other sites More sharing options...
Guest janey Posted January 25, 2008 Share Posted January 25, 2008 hi all, john the figure I was given in August , when in hospital, was only 20 percent of people make it to the hospital and I had managed to be one the 20 percent twice. Now that is the point I start thinking the odds get shorter by the minute. But the point they were making was, the cup is not half empty , it is half full. Realistically its not that easy and as Karen points out, we are going to worry , if we have a headache or just that we don't feel quite right today. Because of my memory problems I have to take my partner, his perception of what they are saying is ALWAYS totally different.! Hate to say but usually right. This is a huge learning curve, so good luck and remember we have all been where you are going janex Quote Link to comment Share on other sites More sharing options...
Karen Posted January 25, 2008 Share Posted January 25, 2008 Hi Jane, I know that I've been lucky ..... well, looking at the odds .... but I'm at the point now, where I've probably worried more about the odds being stacked against me, than getting on with life and enjoying it more. I don't think that I'll ever lose the worry, but I know that I need to enjoy what I have now and to keep that focus. I feel as though I've lost a lot of time with worrying about what could happen.... and it hasn't happened...and I've missed out on a lot of living.... that's not to say it won't happen again....but hopefully, you'll understand what I mean? xx Quote Link to comment Share on other sites More sharing options...
Guest yasmin Posted January 25, 2008 Share Posted January 25, 2008 Hi John I too have a spur on the neck of the aneurysm I had my follow up scan nearly two weeks ago and I am still waiting to hear if I need further treatment, its really cruel the way we are kept waiting but what can you do? Like you Karen I have spent far too much time worrying but its easier said than done when people say get on with your life and live for the present is'nt it? I have to go through another weekend of not knowing whats going on but I intend keeping busy, I've just finished reading ps I love you(very good) so I'm gonna drag my poor hubby to the pictures to see the film Have a good weekend everyone Yasmin Quote Link to comment Share on other sites More sharing options...
Guest janey Posted January 25, 2008 Share Posted January 25, 2008 karen accept my apologies , i didnt meant that to be aimed at you- I really was talking from my point of view. Becuase I am so negative at times. Worrying is my middle name too. sorry about that janex Quote Link to comment Share on other sites More sharing options...
Karen Posted January 25, 2008 Share Posted January 25, 2008 Hi Jane, I'm not sure why you're apologising to me, as you really don't need to.....so bless you! I think that acceptance of what's happened/still happening to us is a personal thing and as individuals, it's only something that each of us can do, in our own time and I was only talking from a personal point of view... From my own viewpoint, I seemed to have wasted a vast percentage of my time in the last couple of years, worrying about the "what if's" rather than just living and enjoying what I have at this moment. I'm lucky enough, to be enjoying a couple of weeks of good recovery, the best that I've had.... so, I'm blessed .... but, it's taken me a huge amount of time for me to get to this point ... I may go backwards, who know's and I'm pretty much waiting for that to happen.... anyway, no need for apologies ..... with my addled (spelling?) brain, I can't even figure that one out! xx Yasmin, it's definetely easier said than done, when people say live for the present ..... it's a personal thing and in my posts, I can only express, what I'm experiencing or have experienced. I know that mental health has had a huge impact on me ..... from my own personal point of view, in July, I shall be coming up to 3 years since my SAH .... at this point I'm due to have another scan, but I'm ready for it .... whatever happens ..... I know that I have a neck left on the annie ..... all I can say, is at the minute I'm at a place where I can deal with the outcome, but this is an individual thing and I can only be honest, with posting and writing my feelings at the time..... and I have no doubt, that those feelings could change.....xxx Quote Link to comment Share on other sites More sharing options...
tennissmithy Posted January 25, 2008 Share Posted January 25, 2008 I'm the same I spend more time worrying about what might happen than getting on with my life. Take care and relax/ listen to your body when you need to and keep us updated on what happens. Take care Laura xx Quote Link to comment Share on other sites More sharing options...
Karen Posted January 25, 2008 Share Posted January 25, 2008 Hi Laura, I would imagine that many people on this website feel exactly the same with the worry .... the good thing is, that we can be honest with each other and share it ..... it kind of normalises things..... if that makes any sense.... Quote Link to comment Share on other sites More sharing options...
tennissmithy Posted January 25, 2008 Share Posted January 25, 2008 Karen- It makes perfect sense. It kind of helps to know that others are either going through or have gone through the same. That sort of sounds selfish but I know it makes me feel better when I come on hear and read about people I now call friends in the same position. The relief/ advice and friendliness of this site has definitely helped me over the last few months. Laura xx Quote Link to comment Share on other sites More sharing options...
Cal Posted January 26, 2008 Share Posted January 26, 2008 Karen, I was truly impressed with your thoughts on where you are now with your life. I am not the person that is dealing with SAH first hand but I am however a big part of it with Jim. Your outlook is so uplifting and I and Jim both totally agree that it is hard to not live with this everyday without thinking about it but it is also very true that we are all alive and in being alive it is important to live life. We have looked at so many different aspects of our lives and believe we do see them different. Live for each day you feel good and keep the positive thoughts. God Bless You! Cal XXX Quote Link to comment Share on other sites More sharing options...
Karen Posted January 26, 2008 Share Posted January 26, 2008 Hi Cal, My recovery has been pretty slow, so it's been wonderful to experience a couple of good weeks ...... the bad days outweighed the good ones for a very long time and even though I still feel as though I've got a way to go, if I didn't get much more recovery, then I would be content enough to stay at the point that I am now. It can often be hard to put things into words, but I'm hoping that people will see how long it's taken me to reach the point that I'm at now and see that it's possible to have continual recovery, even though it's slow. Mentally, I think that time is great healer and again, it's taken me a while to get to this point and as I said, I wouldn't be surprised to go backwards again, but at least I've had a taster of better times and I know that these are possible. Hope that Jim is having a good day and that you're keeping well too ... Quote Link to comment Share on other sites More sharing options...
Shanti Posted January 26, 2008 Share Posted January 26, 2008 Hi John I can imagine the waiting is worse than them just coming out with 'we're going to do this that and the other' at least then you know where you're up to. I've a sneaky suspicion sometimes they have to go away and make sure they have enough funding to do operations, not the surgeons/doctors fault, its down to the faceless people who are 'running' the NHS. Hope you don't have to wait too long before they let you know. Hi Karen I'm only in the very early days of recovery and my 1st follow-up appointment next week 30 Jan. I think I'm just getting over the trauma of the initial SAHs and thanking my lucky stars I'm still here - I was told only 1 in 4 survive - and I've had two already so its good odds. I'm sure if I have another SAH two years later though, I too would find it hard not to wonder if it was going to happen again. The worry must have followed you around like a dark rain cloud. Glad you're feeling brighter at the moment though than you have for a few years, must be a good sign. This website is wonderful, just think, if you hadn't had a SAH, you wouldn't have started this up, then where would we all be?! Wish it would freeze up a bit and snow or something, at least that would be interesting to look out at. Also I always think we have a better summer when we've had a good freeze in the winter (remember it snowed end May in 1976! then followed one of the best summers we've ever had). This endless rain is driving everyone crackers. My heart goes out to all the poor souls who've had their homes wrecked by floods over the past 12 months - must be awful to have to deal with. Right off to put the kettle on... have a good day Love and hugs Lesley (Shanti) 1st SAH early October (right sylvian fissure/middle cerebral artery) - 2nd SAH Right Post Comm Artery (coiled) 13 Nov 07. Quote Link to comment Share on other sites More sharing options...
Karen Posted January 26, 2008 Share Posted January 26, 2008 Hi Lesley, Yes, it has been like having a huge dark cloud over my head ..... After I had the warning bleed, it took me a good year to come to terms with it and I managed to get back to normal........but, the thought was always there, but as the years passed, I was able to put it at the back of my mind. Then it happened again and I had the coiling and thought, well at least I'm fixed now .... only to be told after my follow up scan, that the aneurysm hadn't been totally occluded and that there was a neck still left on it, but they thought that the coiling in place was sufficient to hold it, so were leaving it. So, I think that was another blow to me and the dark cloud loomed over me once more .... so, I can totally appreciate how the other guys feel, when they're told the same or similar......I was devastated by the news and the anxiety was awful. I think that in the last two and a half years, I've worried myself silly and probably the stress has done nothing to help my recovery either ...... but, getting to this point, I'm now feeling a lot calmer ...... I haven't got a clue why though! It just sort of crept up and happened ..... whether that full on anxiety will return or not, I really don't know..... Anyway, that's enough about me! Hope that things are good with you.....it's a beautiful day in Dorset and about time too ....I was fed up with grey skies ..... hope that the sun shines on you soon..... Quote Link to comment Share on other sites More sharing options...
Slim Posted January 27, 2008 Share Posted January 27, 2008 Hi John Good Luck with your appointment, think the waiting/unknown is often the worst part. Look forward to hearing how you get on. Take Care Aine x Quote Link to comment Share on other sites More sharing options...
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