Guest linzi Posted April 19, 2008 Share Posted April 19, 2008 Hi everyone. Sorry I haven't been on the forum, for so long. Life has been good and busy and I've been back at work and generally not having a minute to myself .... I do hope that everyone is doing well. And ooh.. new set up! Have to have a look around. However, tis now late at night and once you read (if you read) the following.. please understand and forgive me for not reading through the forum atm and trying to help and support others. I have posted this on the braine and spine foundation website and now posting here.. part of my story belongs in this new section (thanku Karen for setting this part up) and part of my story, due 'legal issues' potentially involved, probably doesn't belong here (Sorry).. but I hope you don't mind me copying and pasting this in here, for now...as I really need some help and advice...and to type all of this in separate bits, would be too much, for me at this time of night. I hope you all understand. I need "my forum family" to help me and I hope you can.... thankyou xxxx and much love to all of you xxxx to those that I know and those that I hope to get to know xxxx COPY OF MY POST THAT I TYPED UP TO PUT ON HERE AND B&S FOUNDATION WEBSITE: Well... it's been a long time since I was here...so firstly hello to everyone - especially to the friends I have made from here and also from behindthegray - to which I shall also post on, re this situation. I am so lost and confused atm and really would appreciate some help and advice. Apologies in advance, for what is probably a very long and perhaps confusing post.. but my brain is truly frazzled by recent events:-( I suffered my SAH Dec 05. To cut a long story short..apart from still suffering headaches (nowhere near as severe as they were) I have made an excellent recovery. At my 6 month scan, my ct angi and mri matched, so for the final scan, they said they only had to do an mri..that then resulted in them saying that everything looked perfect with the coiling on that ani. The wording "all clear" wasn't placed in this letter (which I seem to remember only went to my GP and I had to ask her to photocopy it for me)..however I told everyone, so happily, that I'd had the all clear. That final scan, was Dec 07. Later (approx late Jan08), I received a letter telling me I would have an appointment, this week, with the Neurosurgeon. I didn't know why - but I felt (and my mum felt, through her own experiences with Neuro issues) that it would just be an informal chat to see how I was etc and perhaps they would want to monitor me for some years etc. Does anyone know if this is "normal" procedure following the 2 year scan?? When I attented the hospital, as an out-patient, this week..I went in to meet my Neurosurgeon, who didn't speak, eg how are you? Nothing! I started chatting..and I happened to say "is this normal that sometimes, I feel as if I have blood trickling down inside the left hand side of my head". He replied "many people that have suffered brain haemmorhages will experience different sensations in their head from time to time. SO FIRST QUESTION.. IS THIS NORMAL??? ALSO MY RIGHT EAR (AND I'VE BEEN TO ENT) DOESN'T POP NOW.. UNLESS I'M IN A PLANE LOL..AND IT SHOULD BE THE OTHER WAY ROUND. I remember reading, on here, some time ago, that someone suffered from a blocked ear after their SAH. This is my right ear, the side where I had my coiling). He then went on to say (looking very awkward).. "erm, has it been brought to your attention that you actually have another ani on the lhs of your brain - a 2mm one"? In total shock, I replied "NO - NO-ONE HAS TOLD ME!" ..then the tears just started to roll within a short time. He didn't even have hankies in his office....when one would think he could possibly do with a box from time to time! So my questions started to come out, although I felt under pressure that he would have another patient waiting.. didn't help when he looked at the clock! In short - he said the percentage was similar if I left it, or had it operated on. I think, he said (tis all a wee bit blurry) that the growth would/could be 0.1% per year..or perhaps he said 1%. He said.."let's see..you are 36, so you could live till you are 70, with that %, or even 80"!!!! Of course, he said that having the op, as I know, brings risks. Just like I've just read on someone else's post, re their daughter - I, too, have to make the choice ... to have the op or not. If I want it, I've to phone his secretary, who will put me on the waiting list. If I don't want it.. he said he wouldn't scan it again. I told him, I didn't feel assured or happy with that..so we shook on it (ie shook hands) that he would scan me ..although he said it would be every 5 years. (Sorry to digress..but if I decided not to have the op, I would want a scan at least once a year and I will be talking to my GP about this next week and she will hopefully write to him..I'm also going to ask for a full body mri to ensure I have no other ani's anywhere else on my body - if this is something they will do?!?!) - QUESTION - DOES ANYBODY KNOW IF I CAN ASK THIS TO BE DONE? Anyways - I came out, trying to pull myself together, for my little niece, who was with me, sitting in the waiting area, for me..and she knew, right away, that I'd been crying and asked me what was wrong:-( Sadly, I just broke down:-( That day, Wednesday was a nightmare. That day, I broke the news to my parents. I went through lots of different emotions...shock, hurt, anger, confusion .. you name it. I cried and cried...and also tried to keep it together for my niece, who is soon to be 10. It was a blessing, that she was here, as I wasn't alone..apart from my dog..although I felt so bad, that she was seeing me so upset:-( which upset her - although she remained so strongxx I took her back home to her mum tonight..and this is the first chance I've had to look on the pc and come back to the forums, that I have used in the past - and have found so helpful. Sorry to rabbit on .. but to digress from the fact that I need to decide what to do...what is annoying me is that why have they waited "this long" to tell me that there is a 2nd ani? The neurosurgeon, looked so awkward and said "I guess it's my fault, that you haven't been told"! Why, when just as my life is starting to get back to normal, does this happen? I feel I should have been told a lot sooner than now. He said "they had been monitoring it"! First I've heard of it - nearly 2 and a half years later. Time will tell, if it was there when I had my SAH, or if has appeared since then. I have spoken to the GMC - General Medical Council (I think) and also the Ombusdsman (can't spell). I shall be putting in a formal complaint to the CEO of my health board, concerned and also sending in details to the GMC. They are the ones who would investigate this and this Surgeon. I don't want this happening to anyone else. I doubt (and wouldn't want it) that he would be "struck off" - but this is totally unacceptable, imho, and needs to be fully investigated. He also, at one point, said he would refer me to a physio, as I'd suffered palsy and he never did that. I've done my own physio with swimming and a weight ball and lifting even tins of beans, to strenghten my left side! I asked him, to look at my notes, to tell me what size my original ani had been..so I could compare it to this "new" one (or at least, new in the terms, that it's "news/new" to me!) - he flicked through my notes, awkwardly and didn't tell me. Or was it, that he couldn't ..... who knows!!! I have been advised that through the Freedom of Information Act - I can request all my medical records. I will ask my GP re this - however if anyone knows how best, I do this, please can you let me know. ???? Also .. I want, in my letter, to ask questions like "when was this 2nd ani, first noticed/what size was it then/has it grown/why didn't you tell me sooner/yes i know you can only operate on one ani at a time (as he told me) but why not do it a few months later, after my coiling, whilst I was still off work and not more or less when I'm back to normal (not back to my full time job as cabin crew, but back to grounded duties on a phased in/part-time basis)...I've seen others say they went back for 2nd/3rd coils/clipping a few months after the 1st!! I spoke to a lawyer also. He does believe I have a case..however experts would have to be brought in (costing alot of money) and the problem would be.. "well did this affect me medically - ie this 2nd ani"? Well how does anyone know if it has or hasn't? Perhaps my recovery would have been alot quicker? Perhaps I wouldn't still be having headaches? So if anyone has any experience on the legalties of this, that would be very helpful. When the surgeon gave me the % stats..I said "I don't mean to sound cheeky, however, you are talking statistics here..and really, is it not 'how long is a piece of string' as everyone is different"!! - does anyone agree with me on this.. or if any medical experts that come on here, can you please help me further and give me some advice?? I am so sorry to rabble on.. but, as you can probably gather I am very anxious/numb/upset/angry/lost!!! My niece being here definetly helped..and in-fact, yesterday I felt it was easier to be in "denial", in some form. I have to say, however, throughout the day, yesterday, my mind would go back onto this and that's when I was pro-active and did my research and got speaking to the GMC etc.. With doing this and writing letters..I am hoping my full case history will be researched and this surgeon will be questioned etc..and I can get some answers. I am not a person who would like anyone to get into any trouble..but I do, feel it's totally unacceptable for me not to be told about this until NOW.. am i wrong to think this way??? Am I?? When I first heard..and told my parents .. my heart and head, told me to have the op...and I still feel I should have as I don't want a time bomb ticking away. Anyone that has already suffered a brain hem will know what it's like...as my surgeon said, when asked "what would you do" (although I did apologise for asking him an awkward question, putting him in a difficult position)...in fairness, he said "i'd probably do nothing, however I've not had a brain hem, to see things from that perspective". Why do they put the onus onto US to have the op? Some ani's don't get operated on...but this 2mm has an option to be operated on .. so one has to wonder, why they don't just say, "we're doing it" (other than, sorry to be cynical , the cost to the NHS)! Yes, obviously if I was in total danger of having an SAH sometime soon, they wouldn't have let me walk out of the hospital.. but WHY, do WE have to make the choice.. op or not! I am not a neuro surgeon!!! I now, due to my working situation, have things to think about there.. but before I do this.. I really just need to speak to people who can listen to me rabbling and somehow help me. I am not asking for anyone to say to me "I think you should or shouldn't have the op" - as I know, that's my decision and one, I do feel is for the best.. however if people could please tell me .. is a 2mm ani a big one in the grand-scale of things? what are the pros and cons (apart from a time bomb, ticking in my head, would be gone... and the worries/risks that come from having an op). Does anyone know the recovery time on a cold coil op, roughly? Is it realistic, for me to be able to 'as such' (via my GP) 'demand/ask for' scans every year? Scan my entire body at least once? Anyone have any advice re this? I am so sorry. If you have gotten this far, reading this.. thankyou. You must have alot of patience.. I am just so lost. If anybody feels that by asking me questions, to which I can then answer, perhaps it will make my post make more sense....because I'm typing as I'm thinking...and it's all just coming out. I realise I have issues here re investigating this matter and complaints procedure (which i will follow)...so any advice here would be appreciated, to aid me in what I have to do and will do?? I realise I have issues re my emotions (issues not being the right word, but hopefully you will realise what I mean)...these will be dealt with with the help of "my family" and by that I mean .. you guys and the peeps at Behindthegray. I, potentially, will have the op..however if I choose not to have it.. I'd rather not tell many people about this...as I don't want everyone knowing.. I don't want "ah poor girl" etc. Just me and my way of dealing with things... I am a strong individual..however I'm not always strong .. and this is why I am here...needing help and advice..but I prefer to try to stay strong for my close friends and of course my family. I don't like people to be upset or to worry. And I realise I have questions/issues re what to do next?? I really do hope my post makes sense and thank you to anyone, in advance, for taking the time to help me. PLEASE HELP XXXXXX THANKYOU XXXXXX L xxxxx With much love to all of you..whatever your situation may be..and please, if I can be of any help to anyone, with anything, please do let me know. I may have this on my mind, atm, but I am always there for others. In fact, lol..so much so..that I think I've kind of got to realise, that at times, in this life..we've got to learn to put ourselves first. I find that's one of my weakness's in life....as I like to care for others and support them...but I'm here, asking for help..so I guess that's a good start xxxx Ps - As not logged on here for a while...whilst previewing my thread, prior to posting..it was interesting to see my signature with happy smiley faces at each side " Today is the present..and it's called that because it's a gift!! Enjoy life to the full and take each day as it comes:-) " ! I shall try to remain thinking that way..but it's hard to have the smiley face atm PPS Lots of love to you Sami and Happy Birthday once again xxxxxxxxx Quote Link to comment Share on other sites More sharing options...
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.