2mm (they think) fusiform aneurysm

[ClaireyCro]

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

[ClaireyCro]

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

[Winb143]

Claire,

I do not know what I had, but keep on to Doc and Hospital keep asking until satisfied

Good Luck

Love

WinB143 xx

[ClaireyCro]

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

[goldfish.girl]

Hi Claire,

I'm sorry to hear that you had a bit of a break down this morning - an aneurysm is a scary diagnosis to hear, especially if you are searching the internet to learn more Sometimes it is not as bad as you are led to believe on there, especially with an aneurysm so small that often treatment will not be required but obviously, that does not mean you won't be offered treatment or have side effects. None of us are neuro doctors and it's hard to be able to give advice on your personal situation regarding what symptoms could be caused by the one they have found. For most of us, we only have experience of recovery from a bleed rather than pre-discovery experience. It's good to hear the neuro Dr is looking at your previous scans again and I hope he/she offers an appointment soon to discuss this with you and either give you a choice of appropriate options or put your mind at rest. Hopefully it is a very good sign that they are not screaming for you to be admitted immediately?

I had a further post bleed surgery to treat a 3mm anneurysm but this was offered as a choice, not an emergency situation. I think Sarah also said to you before that she has one the same size & it is being monitored regularly. I hope this helps to keep a lid on the panic you are understandably feeling at the moment.

As much as you are able to, try to keep calm until you are given information on your own situation by the experts.

Take care,

Michelle

[kempse]

Hi Claire,

I, too, am sorry to hear you had a bit of a breakdown this morning - there is little wonder, what with the news you've recently had, the lack of sleep and the fact that this has been going on so long for you. I think you deserve a medal for perseverance!

Hopefully if you have managed to catch up on some lost sleep, you will feel stronger and better prepared to continue trying to get the answers you deserve.

I know from personal experience that neuro departments aren't the quickest and I don't think they can possibly realise how any waiting we have to do, or delay in hearing something is an awful thing to have to go through. My last scan, for example, was done on 17th July and my follow up appointment to get the results was on 24th October - a long wait wondering and worrying:crazy: They did admit along the way that my results had got lost in the system -it wouldn't feel as bad if they were only dealing with our big toes!

I think it's difficult/impossible to control our emotions when uncertainty is hovering over us, but much of it is caused by the "unknown" and the "what ifs" and quite often those aren't always as bad when we have the facts.

Again, I wish you well and take care,

Sarah

[ClaireyCro]

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

[kempse]

Hi Claire,

You must be so exhausted and frustrated by all this - and it not right that you feel you are having to fight so hard for your own healthcare. I'm not sure if you will not be seen until they have caught up with their backlog, or whether that's just your assumption - either way, you are understandably concerned about the whole situation which, having re-read your other post the other day, has been a long drawn out nightmare for you.

I mentioned PALS on the other thread and wondered if you feel that they may be able to help in any way. If you google PALS and click on complaints, you will be able to judge whether that is a possible route for you to take - at least they could take some of the stress away from you and you wouldn't feel quite so alone if you had someone fighting your corner with you. Plus you could copy and paste your posts on here so that you don't have to repeat it all over again to them.

I presume you are still suffering with the symptoms you mentioned in your previous posts?

I know when I have assumed that my aneurysms have been the cause of some symptoms that I've had, ie. visual disturbances and a single episode of double vision (my unruptured one being very close to my opthalmic artery) I was told after yet another scan, that this was not the case - so it's all a bit mind boggling and not very reassuring when we still don't know what does cause the symptoms if the aneurysms don't:confused:.

Good luck, but stay calm - you're doing well,

Sarah

[ClaireyCro]

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

[Sandi K]

Hi Claire, I've been reading this thread and haven't commented yet because I didn't have an aneurysm. My bleed was a NASAH, unknown cause. In some ways I suppose it's easier because when it happens it's unexpected. In other ways its still quite scary because I don't know what caused it and therefore if it will happen again (stats show it's unlikely though).

I imagine having to persuade the medical profession to treat you is extremely frustrating, beyond belief! Especially when you aren't feeling well.

Thinking of you Claire.

Sandi K. Xoxox

[ClaireyCro]

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

[Daffodil]

. I too have a smaller untreated anneurism which is being watched but also considered to be ' insignifcant', eg not worth coiling yet. Sometimes the choice of words could be better thought out.

You asked what would we do? Me? Well I had no appreciable symptoms before I had my SAH , nothing to say that something would pop but then it did anyway. You on the other hand have had a vile headache for 3years but the neuros are happy that it's not being caused by anything visible on their scans and seem to be saying dont worry.

It's worth asking yourself what would 'good 'look like? What are you hoping for and maybe focus your effort on acheving that. Is it a confirmation of what's happened? Are you ok that they might never know this long after the initial event? Is it getting a second opinion? Is it getting help for these headaches so they stop interfering with your life and bring you some relief.? That's what I would do, focus on the specific of what I want now.

I really recommend Headway, they may be able to help you navigate the support thats out there and maybe get some alternative views and allow you to move onward with this, hopefully to a diagnosis but if not then to live with the effects of your brain change.

Only you will know how to move forward. You hopefully feel reassured that there is nothing on the scans but this still leaves the headache mystery so I understand your misgivings.

[Wem]

Hi

I had a SAH 10 months ago and was told by the registrar neurosurgeon on my 1st oupatiebnt visit 6 weeks after the event that I had a 2nd anni approx 3mm that they were keeping under observation. This was a complete bolt out of the blue for me and sent me into an immediate panic.

I had a follow up MRI 6 months later and eargerly awaited feedback on the status of the 2nd anni only to be told that they no longer think I have a 2nd anni. It has now been desrcibed to me as a saggy vein. I was told not to worry, the neurosurgeon does not believe it will develop into an anni but they will continue to monitor.

I have decided it is time I started to live again and try as much as possible to put the last 10 months behind me. I too am starting to have some good days and I have to put my trust in the very skillful neuro team that saved my life. If they believe I do not need to worry - then I do not intend to.

As Daff suggests, identify what you want right now and focus on achieving that.

[VanessaW]

Hi Claire

sorry to hear you have had a rough time of it all, it must be nervewracking having such uncertainty.

I am not a neurologist, but a few things to note are as follows:

a fusiform aneurysm is an aneurysm! sometimes it is regarded as a "dilation" of a blood vessel, but strictly it is classed as a type of aneurysm. 2mm is very small. It sounds like you have been messed about, but it's important to note that imaging techniques, whether CT or MRI or whatever are not infallible. I have a 2mm aneurysm (not the cause of my SAH) which was discovered incidentally. When I had an MRI as an inpatient they mentioned that it had been difficult to visualise this, despite them having seen it on a CT angiogram. In a further MRI, they could visualise the aneurysm quite well and tell me that it has not grown. I'm just saying that though these techniques are great, they are not perfect.

2mm aneurysms are usually left and are monitored. However, your neurologist might have a different opinion/protocol, I could not possibly comment.

A couple of medical research papers that i looked up indicate that fusiform aneurysms can indeed cause headaches and other symptoms such as dizziness. I am not saying this is the case for you, your neurologist knows best, but it is not impossible.

After the scan report, they should have given you a definite plan, i.e. whether you be monitored or if you need a follow up appointment to discuss any possible treatment. This is usually instigated by the neuroradiologist. It's not good that you have been left hanging. I don't know where you are in the country. I just contacted my neurologist's secretary and asked for an appointment and got one pretty quickly. Maybe I was lucky, but you should have one to discuss your worries and decide on a plan. Ask your GP to intervene on your behalf if you are not getting anywhere. You could also seek a second opinion, you are entitled to do this if you remain unhappy.

Best wishes

Vanessa

x

[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