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Time for an update, I think


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Hello everyone, I realised that like a fool I have been pottering on as we do, but not really being honest with myself or with you my friends. I have been having little old problems here and there and have done what many of us do I think and put it down to 'early days' . Then came the call to go back to see my consultant for a checkup, he was pleased with my progress so as far as I was concerned, so far so good, but the problems 'poor balance, lousy memory, extreme tiredness etc, well I don't need to tell you what was going on :wink: still went on.....'early days I supposed! I then was told that I was to go back up to the hospital for an angio, which I assumed was a routine thing, but no! I was told when I got to the hospital and was giving my consent that when I had an MRI scan months before it had shown that there had been some slippage with the coiling and that there was also evidence of further 'bleeds' After the angio I was assured that the consultant neurophysician who did the angio and my own neurophysician would meet with the neuro surgeon within a week and they would decide if they would leave me alone or decide to recoil, that was four weeks ago yesterday!!!!! (Today, having established that my GP knew nothing of all of this :!:) I tried to get some info but not a bit could I get there was no-one there who could help. I'm afraid I have left a 'to the point' message for my consultants secretary to get back to me on Monday as I want to know what is going to be done! In the meantime we plod on, far from feeling well and struggling as you can imagine I know John (Ninja) will know what I mean!I suppose eventually someone will get in touch, I hope I'm still around to hear what they have to say! Sorry I've had a bit of a rant, but I know you will all understand! In the meantime I will sign off as

Frustrated of North Antrim :evil:

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hi perry

you are going through the mill im sorry you seemed to have been ignored or they are on holiday i really hope someone gets back to you monday and will put your mind to rest you are entitled to rant and rave sweetheart just wish you had done it earlier to save you building up to the pitch are now i cant do anything except be here for you to rant and rave untill you can see daylight so from me to you a big hug and cuddles it will get better sweetheart and remember YOU will be there when they decided what to do for you and it should be all plain sailing so to speak take care thinking of you

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Good news :) The secretary not only got back to me in response to my message but she did so at 9.15 a.m on Monday ( Secretaries can be great allies) She did not know anything at all but said she would find out! On Friday I received an appointment to see the neuroradiologist next Thursday and my consultant surgeon in September :) We should at least now find out what is going to happen. They must have known that I had already decided that I was going to go through the complaint channels :wink: I am glad that as things stand I may not need to and I must admit to feeling relieved that someone is about to do something, even if it's only to keep me in the loop :?

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Thank you for all your support :) I have now seen one of my consultants ( I have four greedy pig;))This was the neural-radiologist who did my coiling to talk through the results of my angio and make decisions re treatment. In order to facilitate earlier treatment he has asked me to give him permission to pass my case on to another consultant ( one I have met, in fact he did my angio a few weeks ago, I agreed quite happily as they are both top men here in NI. I am to have recoiling probably at the end of August or early September, I gathered also that they are watching another anni, which appears to be pretty stable at the moment and is not increasing in size ( long may that continue) Keep at 'em John, it works. He was very sorry about the lack of communication and has asked me to help (politically by lobbying as our own Stormont assembly now holds the Northern Ireland purse strings and then we discussed the need, of which he is very aware, for a support network. He was interested to hear about BTG and has taken a note of the URL and will I'm sure be paying a visit! He has also agreed that I should go talk to the new consultant recently appointed to our Stroke Centre in Coleraine, where I was in rehab, to help to get a support network rolled out province wide :D I was really pleased at how receptive he was to my pointing out the big gaps in support and care and that he fully accepted that this was indeed the case :) All suggestions, gratefully received with ideas on how to deal with this don't forget that my brain got banjaxed too :wink:

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Hi Perry

I'm glad you got somewhere with your appointment and your concerns taken seriously. I'll look forward to hearing how you get on with Stormont! I think if I was campaigning for one thing post SAH it would be for everyone to have a chance to see a neuropsychologist as part of their rehab & support afterwards.

Best wishes

Anne x

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Hi Perry :D Well done you xx I also think that there should be a back up centre where you can get call outs or go and visit and most importantly get information....i came home with nothing at all...like many of us...was so very scary! If it was not for BTG and my good friend Yasmin that told me about BTG....well....i know for sure would not have done as well as i have now!!! Thank you to all my special friends on here that helped and supported me and still do. Good luck Perry i admire you greatly!

Take care

Love Tina xx

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