ClaireyCro

Hi all Sorry not been online for a few days. Thanks for all of your messages, and sorry for my repeated posts I just find it so helpful to talk to you all. I do need to identify exactly what it is I want right now, I think my problem is I've completely lost trust in the Consultants and because of that I struggle to accept what they say as I can't figure out if its truth or they are trying to fob me off because they have made so many mistakes... trust is a horrible thing to lose when it relates to your health. Guess I just want honest answers now and I'm hoping they will finally give them to me. My Neuro is now going back over all of my imaging, even though they said they would do it ages ago and I'm hoping he's going to come back to me next week. Vanessa thanks so much for looking that up, I too have read medical case studies etc on the internet and seen that the symptoms can be related guess will just have to wait and see what the neuro says. Thanks again to you all for all of your support and will let you know how I get on xxxxx

Hi all Thanks for ur message Sandi remember you saying before that you had an nasah and can imagine that must be pretty hard to deal with bless you, how are you getting on now? Well had another response from my neuro saying that he doesn't feel that what has been found is significant and therefore doesn't feel he can comment much more on it!! I just give up I'm in their hands and they control it and that's that as far as I can see just really don't know where to turn next!! What would you all do in my situation? Xxxx

Hi Sarah I am completely exhausted with it, they just make me so angry but I know I just need to stay calm because getting angry will just make me feel worse. I have still got symptoms. My headaches started one day in November 2009, they have never gone away and wish for the day that I wake up in the morning without a headache, I do think some of my headache probs may be sinus related but its the odd pains in the back of my head that feel like somebody is inside ripping my brain apart that come and go that I think poss could be related to the aneurysm. My vision is still an issue, when I saw the Opthalmologist again last week she said that my visual fields are still abnormal but they can't pick up a specific pattern and now she is also saying that my left pupil is not reacting to light properly and equally with my right pupil so they have said they are sending me for a visual evoked potentials test to test the signal from the back of my brain to my eye, I don't know if its related but from what I've read online (know I shouldn't really do online research but I only read medical sites etc) it can be related, I've not suffered too much with numbness on my right hand side for a fair few months now occasionally my finger tip will go numb or my toe and the occasional dead arm but other than that that hasn't bothered me too much, and still get dizziness all the time. I can't see how its not all related to be honest but then I'm not a Doctor. What have they said about your vision hun, what are your visual probs like? Unfortunately in Wales we don't have PALS, each health board has a complaints procedure and I did complain earlier in the year, when I got the response back I read it and then had to fold it up and put it somewhere out of sight for a while because I was that angry with their response... they basically made me out to be completely nuts and that they were right and that was that... even to the extent of it mentioning around 4 times in the letter you haven't got an aneurysm or any neurovascular problem for that matter... absolute joke. I think the next step for me will be the ombudsman, I'm going to give the Neuro until Tuesday to reply to my email and if he doesn't that will be the next thing I do. I said to my mum last night... it wouldn't be so bad if they just held there hands up and said ok we are sorry we were wrong however this is what we are going to do to put it right but no instead they are just trying to protect themselves all the time, pass the buck and fob me off.... don't think they realise I'm a bit of a bull in a china shop lol!! All I want is for them to be doing what they should be doing and offering guidance and support but instead I'm having to fight with them, and yes it is so tiring especially when you don't feel well anyway. Oh well, moan over, thanks so much for all of your support... it really does mean alot. Claire xxxxx

Hi everyone Thanks Sarah and Michelle for your messages and kind words of support, it means alot. Can't believe they kept you hanging on that long Sarah bless you!! I wish my Neuro's would admit things... I feel like screaming, they seem to be to busy trying to protect themselves rather than looking after their patients. After speaking with the Neuro's secretary the other day I actually had an email from the Neuro today, saying he had tried to call me on my mobile... didn't have any missed calls funnily enough. He said that my symptoms are not caused by this most recent finding and that the what the report states does not 'qualify' as an aneurysm and he will see me soon (once they have caught up with their 3 month back log I assume)!! I don't get it the GP said on Monday that it means its a small fusiform aneurysm, I even emailed the Neuroradiologist who reported this on my scan saying just to clarify what you have put in the report 'there is a 0.2cm fusiform dilation of a distal branch of the left aica' means that I have a small fusiform aneurysm? His response was yes the dilation is a small aneurysm. The only thing I can assume is that my NHS Neuro is trying to fob me off because they know they have made a mistake back in 2010 when initially the aneurysm was picked up by another NHS trust where I used to live and when I moved they didn't do the correct scan as requested by the Neuroradiologist where I used to live. I feel like I am having to fight for my own healthcare just because they haven't got the balls to admit they were wrong and made a mistake which I don't know what anybody else things but I sure as hell think it isn't right. I'm genuinally scared because I think I'm having to sacrifice my own health just because they don't want to admit they were wrong and sort it out. Sorry for the moan, I feel like its all I ever do on here!! I just don't understand how now that it has been proved that it is an aneurysm they can't man up and sort it out and give me an honest answer for once. I did email the Neuro back basically questioning who reviewed my scans, when they were reviewed and exactly what scans they reviewed because as far as I can make out from his email it doesn't appear that they have reviewed the MRA scan I had done privately in June which I provided them with the images of in September and they told me they were going to review it, the same scan that the aneurysm has been picked up on now when compared to my original MRV scan from 2010. I also pointed out that I am completely confused because of so many conflicting messages and I don't understand how he can say that it doesn't 'qualify' as an aneurysm when both my GP and the Neuroradiologist has said it is an aneurysm, surpise surprise I didn't get a response. I really don't know where to turn, I'm in a postition where I've been given this news and have no support from the NHS whatsoever. Please somebody tell me if you think I am being over the top with all of this, I appreciate you have all been through alot and probably could do without me moaning like this. I know I'm a lucky one... its been picked up and its small but I'm still absolutely terrified and feel completely alone. Any advice would be much appreciated. xxxxxx

Hi all Thanks for the messages!! I've now spoken with the neuros secretary she is in the process of getting my file from the other hospital as went there for an opthalmology appointment last week, she said she is seeing my neuro on Friday but he is already aware of the situation and is going to go back over my various scans and they will be in contact!! Going through so many emotions... Completely broke down this morning, consequence of not really sleeping for the last couple of nights I think, struggling to concentrate at work and just feel in a bit of a daze really!! xxxxx

Hi Michelle and Sarah Thanks for your messages you have out my mind at ease a bit!! I think I'm more angry at the moment than anything that they misdiagnosed it two years ago!! I've called the neuros secretary this morning on the advice of my gp to be told that there is a bit of a backlog on review appts at the moment.... OF A FEW MONTHS!!! I explained everything to her and she is going to speak to him on Friday to ask if he wants to see me sooner!! Oh they frustrate me!! Just got to wait I guess just winds me up that the only reason I've got to this point is down to me being resourceful and pushing because I knew something wasn't right!! Your right as far as I can see a fusiform aneurysm is just a different shape one it's a dilation of the whole width of the vessel like a spindle so there's not a neck as opposed to a berry/saccular type!! Haven't a clue what that means in terms of treatment etc or what they will do with it but as you said it appears to be small at 2mm!! Aaaaaaarrghhhhhhh.... Sorry just needed to get that out!!xxxxx

Ooh forgot to mention the aneurysm is on my left anterior inferior cerebellar artery whatever that means!!xxxx

Hi all Some of you may have seen my posts in the introduce yourselves section which explains my story... It's been a bit of a mare but hey ho!! I've had neuro symptoms for the last 3 years starting with a headache that started and never went away... Yep been constant for 3 years now!! That was followed last year by intermittent numbness, dizziness concentration issues and vision issues, followed this year by more visions issues... consultants have said there are probs with my peripheral vision but they can't find a specific pattern and also that my left pupil is not reacting to light in the same way as my right one!! Anyway yet to find out if this new development is the cause of all these symptoms as got to ring neuro today after my gp read my scan report last night and informed me!! Just wondered if anybody has any experience of fusiform aneurysms or similar symptoms?? Also if any if you can give me an idea of what to expect next i.e. are they likely to do a proper angiogram etc?? As many if you have seen from my story so far I've had a bit of a bumpy road getting to this point and any advice would be much appreciated. Thanks so much to all of you.xxxxx

Hi all Just thought I'd update on my post from yesterday, I saw my gp this evening who read the report and says it means I have a fusiform aneurysm in my left aica!! She's told me to ring my neuro in the morning and find out when my appt is... When I saw him in September he said he would see me in 3 mths!! Don't really know how I feel to be honest, first of all lucky it's finally been picked up, then anger that it shouldn't have had to get to this as they should have sorted this two years ago, then upset, then absolute terror!! Any advice would be much appreciated.xxxxx

Hi all Hope your all doing ok. Hope you don't mind me posting, just got a question and not sure if any of you can point me in the right direction. I've had another opinion on my MRA scan and they also compared it to the original MRV scan from 2010, they have said that on both scans there is a subtle 0.2cm fusiform dilation of a distal branch of the left aica!! I know fusiform can be a type of aneurysm and I'm going to take the report to my gp tomorrow but has anyone got any ideas of what this could mean?? Cheers Claire

Hi everyone Hope your all doing ok!! Had the results of my mra a few weeks ago and they didn't find an aneurysm good news!! They have said that the blood vessels on the left side of my brain are alot more dominant as the right sided ones are slightly under developed therefore more blood than normal is pumping thru the left side which they think is causing the neuro probs and the pulsatile tinnitus!! They have put me on beta blockers!! I was so happy when i got the results as u can imagine it was a huge load off my shoulders!! I did however receive my medical records today from when I was admitted in 2010 before they thought they found an aneurysm and one thing is concerning me... Obviously I'm no doctor but on the lumbar puncture results it said red blood cells 10 so assuming that means there were red blood cells present in my spinal fluid which as far as I knew would only be present in the case of blood leaking into the spinal fluid!! I had pretty much put everything to bed and have been getting on with things until today when i received that thru the post!! Just wondered if any of u who had a lumbar puncture are aware of what their results showed and can offer any advice?? Thanks as always Claire xxxxx

Hi everyone Hope ur all doing ok. Had the mra yesterday and got another appt with the neuro on Tuesday hoping the report will be back by then!! I've got a cd with all the images on which I had a sneaky peak at last night and there is a bright spot on the left side of my head which they have done two further images of in a separate folder one of those images just shows the vessel with the bright spot which I thought was odd so just got to wait for Tuesday I guess!! Lots of love Claire xxx

Hiya Thanks for reassuring me I think the scanners there from what I've heard are pretty new so that must be why then!! Thanks for all the best wishes too it's much appreciated will let u know how I get on!! Take care Claire xxxx

Thanks to both of u for ur best wishes!! The private scan clinic rang me today and I'm going in for the MR Angiogram next Wednesday, the radiologist hasn't requested contrast which concerns me but it's being done on the stronger 3 tesla scanner... Should I be concerned that contrast dye isn't being used?? Just worried about something being missed again as they were supposed to use contrast in 2010 on the CT scan but didn't!! Thanks as always Claire xxxxx

Hi Everyone Hope your all doing well. I saw the private neurologist today and he was lovely... he has ordered an MRA (MR angiogram) as doesn't feel that the aneurysm that was suspected in 2010 has been properly ruled out with the correct scans. He's already looked through the MRI and MRV images from 2010 when they detected the aneurysm or calcification and is going to request the CT images and also the images from my recent MRI to compare all of the scans with the MRA. I'm having to pay for the MRA privately aswell however I feel better doing that knowing he has suggested it without me having to say anything. He wants to get the results of the MRA and compare all of the images first to rule the aneurysm in or out and then see me again and take it from there. So now I've just got to wait for the MRA however I think it will be done within the next week or so. Is the MRA the best scan to have? Many Thanks Claire xxxxx