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

Hi everyone Hope your all ok. Just thought I'd give you a bit of an update. I've got an appointment next Friday to see a Private Neurologist who I'm hoping will get me sorted. He's based in a Private hospital back where my parents live and also does NHS work. He's going to pull my hospital file from when I was admitted in 2010 to go through before and during the appointment to see if he can make any sense of what happened which is good news. Just found out that actually when I had the MRI in 2010 4 weeks after being discharged, they actually did an MRV (MR Venogram) which is how they picked up what they thought was the aneurysm. The reason they did the MRV as part of the MRI was because they were looking for Venous Sinus Thrombosis. Still can't quite believe they picked that up and then the hospital where I am now didn't do the correct CT scan!! I tried to get information about what was actually done as part of the CT in Oct 2010 and also as part of the MRI I had in April and they wouldn't tell me, they seemed to clam up... makes you wonder doesnt it. The Neuro I'm seeing on Friday is going to try and get access to all of my CT and MRI images aswell. What cracks me up is that the Immunologist has replied to my letter and got everything **** backwards so that just tells me he's either trying to fob me off or he doesn't really want to look into things. It says that the radiologist where I am now reported on my MRI scan from when I was admitted in 2010 when she didn't it was the radiologist back where my parents are from, he also said in the letter that there has never ever been any mention of vascular issues... Funny that, did he actually read my MRI report from 2010 when they did the MRV because they were concerned about Sinus Thrombosis and they found an aneurysm!! Absolute joke!! Fingers crossed I'll start getting somewhere now. Thanks again for all of your support its been really appreciated!! Just also wondered if any of you have got any tips on how to approach the appointment on Friday and any specific questions I should be asking? I'm paying £210 for the pleasure therefore I want to make sure I get my money's worth lol!! Thanks again Claire xxxxxx

Hi Sandi and Paul Thank you both for your messages. When I went into A&E last Thursday the Nurse Sister was obviously told what to do by the Doctor before he came down so I don't understand either how they can do all that and then just send me home without examining me just saying that he thinks its best my current Consultant looks into it. My sister works in the NHS looking after children with terminal illnesses and she said unfortunately she also sees it with the kids and its a case of Consultant politics, she was with me at A&E so saw exactly how I was handled. Paul, thanks for your PM bless you I haven't had time to properly read everything yet as went back to work yesterday (although I really don't feel well or ready but had to as going to stop receiving sick pay soon) but as soon as I have I will pop you a response. I haven't had an SAH or atleast not as far as I know. I was admitted with suspected meningitis in 2010 which turned out not to be however they didn't do an MRI until 6 weeks after discharge at which point they thought they saw an aneurysm or calcification and requested that my new GP in Wales organise a CT with and without contrast however they never did one with contrast only without and decided it was a lipoma... in a different area of my brain and a different size to what the MRI said!! Since then I've had a few different neurological issues however now I have objective pulsatile tinnitus and my arms and right leg keep going dead which is why I paid A&E a visit. I'm under Immunology as the Neurologist I saw last year who wouldn't re MRI me because apparantly the NHS simply don't have the resources to continually MRI me referred me to Immunology after my nerve conduction studies came back normal. To be honest I think any new consultant I see in the NHS now can smell a ****** up because of the lack of care and that's why they don't want to treat me... I may be wrong however this is the only conclusion I can come to. The Immunologist still hasn't responded... I'm going to try calling again today and then I'm going private I think. I hope and pray that there is nothiing wrong however I don't think I can put all this to bed or get a decent nights sleep until I do. Hope you are all doing ok. Lots of love Claire xxxxxxxx

Hi everyone Just thought I'd give u an update!! Went to my mums leg went dead for a few mins on Thursday, pulsating was still bad and vision in my right eye still not sorted itself out so my sister took me to a&e!! I was assessed immediately by the sister who listened my blood pressure was 147/84 and my resting pulse rate was going between 94 and 106!! She took bloods put a catheter in my arm told me she had booked a bed and was organising a cta with contrast which would be done in the morning!! A doctor then came down to assess me... He listened to my history and as soon as he got wind that I've not yet been discharged from the immunology consultant the catheter was out of my arm and I was out the door and home quicker than u could imagine he just said I think it's best that they continue looking into it!! So now I really don't know where to turn the pulsing in my head is horrific last nite my lower right arm went dead again for a few mins and the immunology consultant still hasn't responded to my letter or returned my call from Monday!! I don't know where to turn or what to do!!xxxxxx

Well been to see gp and I think they may finally be taking me seriously!! He listened to the recording and also used a thingy inside me ear and he heard it... He said he could hear it and it's definitely blood pumping through my head there's nothing else it could be as if it was something else he wouldn't hear it, he's also noticed the issue with my eye and is concerned about my arms going dead!! He's writing an urgent letter to the neurologist that I saw last year and he said that was all he could do!! This neurologist is the same one who told me last year that he wouldn't re MRI me as the nhs simply don't have the resources to continually MRI people so not holding out much hope to be honest but hey ho!! So now I see myself with 2 options I wait around for the immunologist and neurologist to contact me or I just drive down to my parents house and get myself into a&e there to get a different opinion!! What would u guys do? Thanks so much as always. Claire xxxxxx

Hi everyone I'm in Monmouthshire in Wales live with my partner, my parents are in England but only about 45 mins away which is where I'm from!! I'm just about to ring and book an appt with gp just hope he listens!! Ive tried making a complaint before because a referal wasn't done which was supposed to be and ended up going backwards and forwards between the hospital and gp for 6 weeks to try and sort it out being told different things by different people and the complaint people didn't bother calling me back its all just one big joke!! If I get nowhere this morning I'm going to try calling the complaints team again!! All I want is to feel normal again and get back to being the happy go lucky girl I was!! Xxxxx

Hi SarahLou Thanks for ur msg!! I know it's ridiculous and I just don't know where to turn I've always been a healthy happy go lucky person and never really been unwell until all this kicked off in 2010, it's just been ****** up after ****** up and just end up getting passed from pillar to post, usually I do take my partner with me but he couldn't come today!! I had 2 and a half hours sleep last note because of the pulsing in my head and to be honest it actually makes me scared to go to sleep but nobody will listen!! I've got to go back to gp tommorrow to see if I can go back to work I've been off for nearly 7wks now and it's driving me nuts but at the same time I don't know if I should go back as still far from feeling right!! Guna see what he says (it's the practice manager I usually see anyway) and if no joy I'm going to drive up to mums and go into a&e... It's under the same health board as I was first admitted to in 2010 but atleast they are guna be different doctors to here who can hopefully take another look!! I just want to scream!! Lots of love Claire xxxx

Hiya Mary I've just called the Immunologist's secretary and she is going to tell him about the pulsating and vision issues, she said he has also dictated a response to my letter which she has got to type up today so wether that will shed any light I'm not sure. Over here basically we have GP's who we primarily see if something is wrong, they then refer you to Consultants at the hospital if they feel something needs further investigation.... well my GP's I think have had enough of me and won't really do anything with me already being under Consultants, they just say its all neurolgical symptoms and the Consultants are the ones who aren't investigating anything fully or properly. What makes me laugh is apparantly (so the radiographer told me when I went for the MRI) the reason my CT scan in 2010 and the MRI scan the other week hasn't been done with contrast even though they have been requested with contrast is because 'shes too good for contrast, she doesn't need it'. Well everything I've read and everything you have all told me on here completely contradicts that, it doesn't seem that rare that issues with the blood vessels in the brain are NOT picked up on regular MRI or CT which is why they should be doing an MRA or CTA I think. The other problem is the Consultants put the request for a scan in, the request is then sent to the radiologist to look at and then the radiologist has the final say on the scan. So even though it was a radiologist who requested the CT scan both with and without contrast in 2010 after the first MRI, because I moved from England to Wales in the meantime therefore moving to a different healthboard it was the radiologist here that made the final decision on what scan I would have.... its a joke!! There's no other way round it other than to pay to go private which I can't afford to do and even then the majority of the NHS Consultants round here are also the Private ones anyway so chances are I'll see the same people. The only other option I have is to drive 40 miles to my parents house and pay the A&E department there a visit to see if they do anything but to be honest I'm just at the end of my patience with it all and just feel like no matter what I do they just think I'm nuts!! Lots of love Claire xxx

Hi everyone Thanks for all of your responses, sorry I haven't replied I didn't see any of them until yesterday and then I got slightly concerned but decided to wait to see what the appointment brings!! Surprise surprise he didn't want to listen. I took the letter that I have written to the Immunologist and he didn't even want to read it and didn't read it... he barely let me get out everything that I wanted to say that I had written down. I told him about my eye and he wasn't interested just said some people have abnormal pupil sizes, when I quizzed him about my deteriorating vision combined with it he didn't really respond. I have even managed to record the pulsating sound in my head on my iphone... it was particularly bad last night when I was led down, I played it to him and he wasn't interested just said that lots of people can hear a pulse in their head if they move their head in a certain way.... I said its not when I move my head but once again not interested, funny that because I've read that only 3% of tinnitus for example is actually pulsatile!! He wasn't even phased when I told him that my arms keep going dead like when you have slept on them all night... but its happening when I'm just sat on the sofa watching tv!! No neuro examination, no checking my eyes... other than he got me to sit on the bed and he tried to dim the room as much as possible and that's when he just went hmmm some people just have abnormal pupil sizes you know so obviously he saw it too, no using a stethoscope to try to listen to the pulsating in my head. I played him the recording on my phone and thats when he said about moving the head in a particular way can cause you to hear a pulse in your head!! I just give up, get the impression they all think I'm a raging hypochondriac... he just told me to 'get on with my life'!!!! How can I when I know/can feel something is wrong and they have failed on numerous occasions to properly investigate it fully!! I don't think I can take much more of this, I can't afford to pay for an MRA or CTA scan privately, initially I thought it would only be around £250 but I've since found out it will cost me around £500. Any suggestions anyone?? Lots of love Claire xxxx

Morning everyone Thanks for all your well wishes and good luck messages, just hope he's more productive this time rather than just offering me the paper bag for comfort lol!! Liz - Thanks for that info its really helpful, I didn't realise they could tell with spinal fluid that there has been a previous bleed, definately somthing I'm going to get them to look at I think.... I've now requested my medical records from when I was admitted in 2010 and also a copy of the MRI images... think its going to cost me about £30 but hoping it may help get me some answers and this should then have all of the lumbar puncture results on it so hoping I should be able to see what they tested it for. Mary - Thanks also for your info, it certainly does make you wonder, I'm still yet to receive the MRI report for this latest MRI, he said he would post it but haven't got it yet so will be interesting to read it. The only report I have is the one from the first MRI in 2010 which is the one that mentions the calcification or the aneurysm, I've requested the hospital notes and the MRI images, think I'm going to request the CT scan images and report aswell. Just one quick question... last night I went to the downstairs loo, our bulb has gone and yet to be changed therefore its very dim in there as we are currently just putting the hall light on. When I was washing my hands I looked up in the mirror and noticed my right pupil was significantly larger than my left... its my right eye that I keep having probs with, when I went back in the front room I turned the main light on (the light was off as we were watching a film) and looked in the mirror and it was fine... it seems to be ok in normal light but not in dim light. Is this anything I should be concerned about? Thanks so much again Claire xxxxxx

Hi everyone Thanks Macca and Mary for your replies, I've printed the letter and I think I'm going to just hand it to him and get him to read it as I know I always miss things out when I'm trying to tell people... my brain never seems to want to work when I'm trying to tell somebody everything that has happened. I'm kind of hoping I will hear from the Immunology Consultant that I've actually sent the letter to before next Tuesday fingers crossed... miracles sometimes happen eh lol!! There are just so many things that don't stack up right.... for the last 12 months I have been convinced that all of my symptoms have been ms or somthing similar I haven't even thought about what happened in 2010, obviously why the Immunology Consultant has come up with fibromyalgia as this MRI was clear. It wasn't until I started going back through all of my letters from 2010 and looking into aneurysms and calcification that I realised that when I was admitted in 2010 I had hallmark symptoms of a small bleed, yet when they realised it wasn't meningitis they just kind of left me. I then called my mum and asked her about the lumbar puncture and why they kept redoing it... her response... blood, I then remembered about them not doing an MRI after the consultant asked me if it had been done and I knew nothing about it. I have to wonder if the MRI had of been done in hospital like it should have been rather than 5 weeks after I was first admitted then this whole outcome would be completely different. I then ended up here, and I have to thank all of you for all of your responses... you have all been a big help to me and have helped raise my awareness in order for me to piece everything together and raise questions that until now I didn't even realise were there. I truly hope that I am over reacting and that all this turns out to be nothing however with so many misdiagnosises out there I don't think I can rest until I know for definate what was wrong in 2010 and wether it is relevant to all of the symptoms I have had since. I really wish you all well in your recovery journeys and once again thank you for all of your help, advice and support. Lots of love Claire xxxxx