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Hi all any help would be great please

I had a MRI scan in December 2016 for something unrelated but in January 2017 I received a copy of a letter sent to my Gp basically saying I was fine apart from I had A 7mm Artery Aneurysm at the base of my brain?!! As I'm sure many can relate finding out this way was horrific but after many phone calls I still haven't had a appointment to talk about what is to be done apart from I had a cT scan last week nothing else and me and my family are so worried. I just wondered if anyone has experience my story or if anyone can tell me what to expect for the future? Any information would be great. Thank you very much in advance x

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  • I feel for you me2you my journey started sept 2015 and after many months of not even seeing a nuerolgist i finally got seen end april 2016 3 scans later with as many months wait inbetween i am finally being recommended for active treatment(see my post above). My advice to you is to ring frequently get your gp to find out what is going on and just make a hullaballoo of a nuisance of your self until you get those appointments and answers. Sending big hugs x

  • So I'm not the only one? And if I follow your path I could still have months to wait? It's the waiting that's killing me. Are you having any treatment now? If so how's it going? Thanks for your advice I will keep onto them x

  • Hi me2you reading through your original post again i would say you are further on than i was it took me from sept 15 to july 16 for me to get my ct scan so your wait may not be as long but still keep at them. Im in the north and the proffessrs secretary openy admitted to me that they are up against it with delayed appts. Keep the faith xx

  • Thanks Bonnieblyth rang hospital again yesterday to be told a doctor has left and waiting for an replacement doctor before I can go any further!!!

    Keep well xx

  • Can you ask your gp to be referred to another hospital? Will keep my fingers crossed for you xx

  • Hi me2you

    7mm is borderline for treatment in the NHS, and there is a national shortage of neurologists, so other larger annies will be treated with priority, which doesn't really help you but may explain why there are such significant delays.

    Once you get to see a neurologist they will explain the options available to you, which will be from a selection of do nothing - wait and watch (this is usual for anything standard and 7mm and under); treatment by way of endovascular coiling (where a catheter is inserted in the artery in the groin, fed through to the brain, and miniscule coils of platinum are used to fill up the annie, thus encouraging the blood to clot); or if this is not available (usually because of the position of the annie) then a craniotomy (hole in the skull) and clipping across the base. another option, if your annie is deemed to be high risk but inoperable with either of the above, as mine was, is to have a flow diverter device placed across the base the annie neck in the hope that by encouraging blood to flow in its normal direction the flow to the annie stops and it can deflate in on itself.

    After being told what the options are you will be sent away to weigh them up and come to a decision. They like to give you time to do this as there are risks whether you have surgery or whether you don't.

    After you have made a decision, any decision towards intervention will require you to have further 'gold standard' scans - called neuro-angiogram (and you need to get used to these if you are going down the clipping route as there will be lifelong follow-up in this vein).

    Only once the neuroangiograms have been done and your case discussed by a multi-disciplinary team - including neuroradiographers and surgeons - to weigh up the pros and cons of your preferred intervention - will you be given a date for your surgery.

    From diagnosis to treatment if yours is held to be a routine annie, and therefore classed as elective surgery can take up to 18 months. You will get used to the waiting...

    They say that if you have a 9mm annie the risk of rupture is 20% over your lifetime. If it is smaller - say 4mm, then the risk is significantly less - more like 5% from memory. The rupture, or SAH as it is called, has significant risks should it occur - something like 40% of people don't survive, 40% are left with significant disability, and 20% come out of it fine but probably with minor changes to life nevertheless. So if you plug those into the above, if you have a 9 or 10mm annie the risk that it will go pop and kill you is about the same as you dying from heart disease and cancer. If you have a small annie it is less. The only difference with an annie is that you know it. You know it every morning.

    If you are someone who is able to be philosophical about these things, you might decide to leave alone - particularly if you read what happens to people post-surgery (even minimally invasive procedures such as FD stenting and coiling seem to leave people with issues with headaches, memory loss and other cognitive difficulties. SAH though is quite on another plane.

    There is no right or wrong answer here. You have to go with what you think you can live with - whilst accepting that there are risks either way. Ahead of my neuroangiogram which I had to have ahead of the stenting procedure I wrote my will, DNR instructions, got power of attorney organised, and filed my funeral instructions with my local vicar. There's a 1 in 100 chance of having a stroke and a 1 in 100 chance of dying on the table whilst being investigated. Whichever way you go it ain't pretty...

    Best of luck with working through it all.

  • malalatete wow thank you for your reply very much appreciated I will need to read it a few times to take it all in and digest thanks again.

    Hope you are well in yourself?

  • Hi Me to You,

    I'm very much in the same boat as yourself. I had a 7.5 Aneurism diagnosed only 4 weeks ago & like yourself the worry it's caused for my family is just awful. I was sent to see a Neuro Consulrant in Hull who had my scan pictures on his computer. He explained the two options - Clipping or Coiling & sent me away to think about my options. I should have gone back two weeks later but got a call after a just one week asking me to to go the next day to see him again. I had a few more questions I needed to ask by then. I wanted to know WHERE this Aneurysm was placed within my brain & in my humble opinion unlike yourself mine is smack bang in the middle of my brain. So deep & central. Mine has a sister bleb attached as well so not the best position to be in. After the consultation the Consultant thought it best to put me on his 24 hour cancellation list which I have since found out is a rarity for any sort of cancellation but his list is 4 Months so at least I know the longest I will wait is until July. I've received a letter explaining not to take certain Meds like aspirin or any other types of blood thinning types of tablets so that's where I am at the moment. It's the distress like yourself it causes your loved ones. My husband is very insecure about leaving me alone. It's driving me up the wall ha ha. I know he cares & is deeply worried but it's no way to live. I'm a fiercely independent person & this shall we say "Baby Sitting " I find really unhelpful. I've just found out my Grandson who's 16 & doing his A Levels is on holiday next week so he's coming to stay all next week?? I can see trouble ahead as I'm not prepared to live like I'm some sort of burden on the people I love the most!! I certainly don't want my Grandson who I adore even thinking of having to be responsible for me plus God forbid if anything untoward should happen it's the LAST thing I would wish for him. They all think they are doing the right thing but I am going to have a family meeting over this holiday & I'm making MY point very CLEAR!! At the moment I'm perfectly fine & I'm more than happy to be left alone. I think they are CREATING a problem that shouldn't be there so watch this space ha ha. Yes we all like to be loved & feel needed but we have to carry on as normal as possible until we get some medical intervention. The other thing I wanted to mention is if yours is at the back I've been told they are easier to deal with if that's helpful at all.

  • Yes we are sort of in the same boat families hey who would have them? But who would be without them as they say.

    Glad you are getting sorted I will be thinking of you which treatment are you going for? I bet you will be glad when it's all over and you can then start the recovery process.

    I'm still waiting to see doctor/ consultant lol anyone haven't seen a sole only found out via this letter have rang hospital and spoke to specialist nurse who told me the hospital is short staffed and waiting to employ a doctor? I can't but especially my husband and daughters can't believe we have been waiting nearly 5 months now it a joke I live near Coventry which has what I thought a large hospital that did wonders? They just need the staff to do it lol

    My family are worried about me going on holiday on Sunday to Spain I can already picture my hubby watching me on the flight and asking do you feel ok are you ok?

    If you ever need to chat etc please message me. But in the mean time good look with family Easter chat and look after yourself x

  • I live very rural but the hospital here in Yorkshire best for Neuro Treatment is in Hull. Mine is a bit of a long story really. 14 years ago I suffered a Subarachnoid Haemoraghe which left me really badly memory impaired. I thought my daughter was a really kind Care Worker & I had no idea of who my husband was. The only person I could relate to was my Grandson who was just a Toddler. I looked at him & thought - I know that little kiddie from somewhere & there's something I have to do with him!! It took about 2 years before my memory returned to anything like & it was painful trying to remember. It was a long hard road but I got there in the end. When I was been scanned for the bleed they incidentally found a small aneurysm but it was less than 2 so they explained I could have been born with it & it might never ever change but they would keep their eye on it which they did for about 6 years & there was no change at all. Then just before Xmas I had a sudden seriously low drop in blood pressure which ended up me been admitted into York Hospital. They instantly did a brain scan then did another with dye. I thought they must have read my notes & we're over reacting. They asked after the scans if I knew I had an aneurysm to which I replied yes & as I was under the Head of Departmevt in Hull years before he had explained to me all about it. The York Consultant said he would feel much happier if he could refer me back to the Consultant in Hull as I would know York wasn't really equipt for these sort of Neuro problems. So about 4 weeks ago I went by appointment to Hull & the Consultant just asked me - Now then Lynda what have you been up to? I just said I'd had this big drop in blood pressure for no apparent reason to which he turned his Computer Screen towards me & just said THIS is the reason (Aneurysms must have some symptoms related to blood pressure) & he showed me the Aneurysm on his screen which was now 7.5 but had what he called a Sister Aneurysm joined on to the original one. So I was sent home to think about which treatment I would prefer. I was told it needed intervention so it was clipping or coiling. I went back & I asked him how successful he was with each treatment & I was told he'd done as many of each & he had only had one patient have a stroke during the clipping but she had underlying problems that she knew about before the procedure but she's fully recovered now. I've seen in the USA where they use a special glue now so that's better than both options we have here but that doesn't help us at the moment. So as I've had such a long recovery period I'm opting for the coiling. I decided on this option as the recovery period is much shorter & it's a much less invasive method as well. Either way my Driving Licence has to be surrendered for a time & if things go OK it's 6 months for coiling & a year for clipping. We have an Apartment in Valencia which I like to visit as often as possible but I was ADVISED not to make any flights!! The Consultant said he couldn't stop me & the Guidlines are quite vague but in his opinion the fact that there wouldn't be specialist medical assistance available during a flight in his opinion wait until after the procedure. This was another reason I decided on the coiling. I might not make the summer & a beach holiday but I'm now aiming for the MOTO GP in Valencia in November. I know from this forum there seems to be a hell of a lot of people out there waiting an absolute AGE for any treatment but I've found that all hospitals have a PALS department which I found really helpful to get things moving when it's any sort of situation that affects your Quality of Life plus everyone in this Country comes under a Duty Of Care Law where they have to show exactly THAT - that you are getting CARE!! It might be worth your while looking for the email to the Pals Department in your hospital & explaining to them how this lack of care & action is affecting both yourself & your family. You might start & get some action if you contact them. Me personally I don't cope well with the waiting even though I haven't been waiting very long. I just want to get in & get it over with & hopefully get recovered & start to lead a normal life. While this alien is stuck in the middle of my brain it's stopping me doing what I would wish to do. So it's GOT TO GO & the sooner the better.

    I do hope your not left in the situation you now find yourself in for much longer with no activity at all I think that's a terrible way to be told & then just left with no progress been made or continuation of treatment??

    I will keep you informed of my journey & please let me know about yours I'm interested to hear how you get on.

    Good Luck

    Lynda

  • Hi me2ypu just a quick update. I've received an appointment this morning from my Consultant wanting to see me on the 25th May. I'm hoping this appointment will be for maybe a scan to check how the alien is doing before it gets treated?? I know his list was 4 months long so from him first telling me that would be treatment at the latest July. So here's hoping this is the last appointment before I gat some action & can hopefully get some normality back in my life. All this been super nice from my family is killing me honestly. It's as if they are thinking every conversation is going to be their last so there's no NORMAL content in anything they chat about.. It seems like every conversation has been rehearsed which is ridiculous. I just want everything to be as it was before the odd disagreement over differences of opinion like all families have from time to time. Yes I can understand their fears & I am trying to stick to what the Consultant told me - try & stay calm - don't get upset or do anything that might raise your blood pressure like heavy lifting etc etc BUT I have a life & I'm a pretty direct spontaneous person who can maybe from time to time be a little opinionated about things that matter to me. This family of mine are now as ALIEN in their behaviour as the one in my brain ha ha. Yes they CARE but this over protective Rubbish is stifling me. Roll on me getting this brain alien sorted out so we can have a normal family disagreement even if it's only about Donald Trump ha ha

    Lynda

  • Hi Lyndaryan1 fab news you have an appointment maybe you will be given a date at that appointment I'll keep everything crossed for you.

    I'm now packed that took me for ever have an early flight in morning. I will try and forget it if at all possible while away but back in a week and I will be on the phone to hospital and will also try that pals that you mentioned thanks for that.

    Look after yourself Jennie x

  • Nobody could wish you to have a nicer time than me. I love Spain & I'm never more content than when I'm over there. I know you will be really busy right now but just try & relax & enjoy your holiday - come back with all your batteries fully charged READY TO GET SOME ACTION ha ha

    Lynd

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