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HELP

HELP

Recently diagnosed with a brain aneurysm and learning to live with it. I can’t seem to find anyone who is in the same boat? Xx

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Hi Annie, what have you been told?

How big is the aneurysm? Because it will be a watch and wait scenario if considered small enough. And where is it?

They will only coil if it is over a certain size and in danger of bursting or leaking. They also have to consider if any intervention is too risky to perhaps your sight.

My sister lived with her aneurysm for 10 years before medical practices developed for them to coil hers. When her coiling was done it had grown to 11mm, it started at 10mm, and she had Scans done every 12 months to monitor it from detection to intervention.

She has had no problems since the intervention, but found those10 years quite tough, it's not easy learning to live with a 'ticking time bomb' in your head, just try to remember that they will intervene should it be the right time, and trust them, surgeons will only carry out procedures if the outcome is likely to be good, they won't set up themselves up for failure.

Best wishes

Janet x

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It is 5mm on the left hand side opthalmic artery. It’s a weird feeling knowing one minute you are lucky to be alive and the next minute it could rupture. Emotions everywhere xx

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I haven't had an aneurysm but I've had a stroke. It is hard living with uncertainty. Like you, one day I was fine, next day was unconscious and couldn't speak.

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Hey Annie, totally understand where your at. I was diagnosed with a 12 mm anerysm last September was told it was too big to leave alone and was placed on a wait list for op. In December 2016 I had it stented & coiled, so am one of the very lucky ones. I remember that everyday of that 3 month wait, waking each morning my first thought being I'm alive. Was lucky to have a loving and supportive family who I leaned on. Some days more than others. Take one day at a time, allow those emotions to be cos there's no running from them. An let those who love you support as best they can. You'll make it through. Oh and stay with this site. The posts are so helpful & upbeat despite the subject matter. Very best wishes & lots of luck to you.

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Thank you for the support and advice. Its good to read how everyone is feeling the headaches the anxiety the tiredness i have lived like this for so long and Thought it was normal. I am getting quite irritated and snappy at the moment though xx

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Hi I'm 36 and have just been told there's a strong possibility I have an aneurysm 4mm I'm just waiting to have an MR angiogram to check - I feel the same fine one minute terrified the next !!!!! X

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How did they find yours xx

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It’s nice to no someone feels the same. I was getting pins and needles in my face went for an MRI. When i went consultant said “have you had your second MR ? Went for an emergency scan the same day found out a week later i have a 5mm one. It’s been three weeks now and i am getting pissed off I really need to get it sorted to move on with my life xx

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Thank you very much xx

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I feeling exactly the same ! X

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My heads all over the place atm. It’s such a weird feeling xx

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Hi Annie

I've posted my story elsewhere but here it is, save you searching. Apologies. It is a bit long.

I had a 9mm bilobed annie that was on the ICA but had engulfed the junction and starting part of the left opthalmic in its second bubble. It was found in 2015 in a review of a 2011 scan. We have no idea how long it had been there.

When the docs discovered what it was the first thought was to clip - but the second MRI showed that it was in too difficult a place. Coiling was ruled out too, soon after. The coils would have dropped out of the wide base of the annie into the artery and given me a stroke on the table. It didn't seem like there was going to be a way forward. I know I cried my eyes out in the surgeon's office and on the train home. So for a while they were saying watch and wait -which knowing it was above the 7mm 'safe' to watch and wait stats was really hard. I was desperate to have something done.

In the end the flow diverter was suggested. But this had risks too. By placing a mesh stent in the ICA the idea was to offer a 'scaffold' for the artery to recreate itself. Trouble was , they couldn't say if in doing that the artery would become totally solid - including across the junction of the opthalmic artery, meaning I would lose my sight in that eye. Of course, if the artery didn't recreate itself I would still be able to see - but I would also still have bloodflow through weakened ICa and much thinner opthalmic bubbles, with no-one really able to judge the risk of it.

I had the op in the July of last year. At my six month review and angio we could see what we already knew - that my eye artery was still functioning, complete wih its remaining bubble. But the ICA bubble had gone.

So I have a 4 or 5mm (it hasn't been measured yet - or at least I haven't been told what it measures) annie which remains in my brain post op. It can't be clipped because of its location. It can't ever be coiled because there is a load of metalwork in the way. They will only ever go in there in extremis - i.e. if I have a SAH -and then it will be messy and difficult.

The thing that I thought I could never live with, that I so desperately wanted to get 'fixed' and 'sorted' - it is still there.

And over the last 12 months or so I have learned to live with it. I don't feel fear any more. It colours every day, but in a good way. It makes each day more precious.

I suppose I haven't had a choice but to accept it. They can't do any more. I can't do any more. But I have come to see it as a blessing, (just as I had with my sudden illness back in 2010 that had led to me losing my career and my mobility).

It is hard to see at first, but the only difference that there is really between having an annie and being Fred Bloggs who is 'perfectly healthy' is that Fred could drop down dead tonight too - but he doesn't know it.

Knowledge is for you to decide what you want to do with it. You can decide not to let this take over your life...it really doesn't have to.

I hope you are ok and that you find your own peace, whatever your options come to be and whatever path you take.

Blessings

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You are like an absolute breath of freshair thank you very much xx

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Do you forget things at all I’ve noticed my memory is shocking xx

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Constantly. Worst when first ill as my brain was focussing on trying to walk properly and had no spare juice to run extra services like memory. At my ME rehab sesisons they taught us that you need to try and fix things in long term memory as short term is always first to go when the brain is under stress. You do this by repetition or by using frequent reminders until things 'fix' themselves inside your head.

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I am really bad i am so forgetful. Numbers and words are even starting to mix together xx

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Hi annie i remember feeling the exact same as you unfortunately the wheels turn slowly in the over stretched nhs and it was nearly 2 years from my seizure that i had my clipping op. Believe me in that time i was near hysterical with all the nhs admin cock ups that went beyond ridiculous but i got there in the end. Im nearly 2 months post op and doing very well thus far. I am so very grateful to the surgeon and his team for my life.

My advice is think positive and push for appointments if there are unacceptable delays. However be prepared for it to be monitored as under 7mm. Mine grew from 3 to 5 in a short time and have a family history hence my op.

Good luck x

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Thank you i am still at that in between stage atm xx

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HI, I have an Arteriovenous Malformation (AVM) which I think must be quite similar to an aneurysm. It is not being treated because it is large and its location deep in my brain means that treatment would carry a huge risk of deficit. I have lived with the knowledge that I have it for about 25 years now and fortunately for me it hasn't ruptured. I have a lovely family and am grateful every day that someone has protected me from this. Personally I hate the phrase 'ticking time bomb' although I have heard it many times. I just try to live my life in the moment and forget about it as per my consultant's advice.

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Hi, Iam in exactly the same situation as you and have been told that I cannot be operated on because of where my AVM are (I have more than one). I've had mine or at least I had the diagnosis 29 years ago and now live one day at a time. I'm grateful for each morning ,then get no with the day.Its lovely to be here and long may we all continue

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Thanks dinkylimpet. Having just read what Maya72 says makes me think that we're the lucky ones actually. Having an AVM is hard enough. But I definitely don't want to swap it for a load of deficits that affect my everyday life. I think its the human condition to want rid of anything like AVM asap. But maybe leaving it be is the best option in some cases. Best wishes.

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29 years You are doing really well xxx

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25 years WOW that makes me feel better xx

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Hi Annie! I would advise you do not rush and listen what they advise you go for second opinion.I was as the same as Malalate rush to fix .After 8 month post op I have so many side effects. I had 8 mm para ophthalmic which was clipped 8 month. First it was not occluded fully according the radiologist report and I have metallic smell come out from my nose which makes me continuous dizzy. I can't work and waiting for MRI to confirm what is the next step. From my experience just get on with your life and wish you take a right decision .

Maya

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Thank you very much for sharing this with me i hope you are ok xxx

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Hello beautiful girl, I know it's not easy but as the others have said, take the advise of your specialist, your Annie is quite small and they will only operate if they are sure that is the best decision for you. Like Mal mine was 9mm when found and I waited eight months for surgery, I can't say it was easy to forget about it, but for the most part that's what I tried to do, I've always been a positive person and am a great believer in fate, your a young lady, with a life to lead, make the most of everyday, a lot of people have aneurysms and don't know about them until they rupture, at least you will have regular scans and be monitored for any changes. You will find lots of support and good advise on here, keep in touch, love Alice xx

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Thank you alice thats what i keep thinking i am lucky they have found it so they can monitor it. Trying to take the positive out the negative xxx

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Hiya Annie

Apologies for the delay in relying tonyour post.

I’ve been looking at this site for months and can’t believe I’ve only found this section which is so important to me as I too have brain anerysms. 4 but they have been watching one which is 6.5 mm for 4 years!!! Yes 4 years!!! I’m just so terrified and have seen quite a few vascular surgeons up and down the UK. I’ve finally found one I can trust and planning to have it coiled, but have got to put a plan in place to deal with my fear.

My Mum has a fatal brain haemorrhage 30 years ago so did her brother so that is my 2 family members, plus having PKD puts me at a higher risk.

Mine was found during a routine MRI so I’ve got to be considered lucky but like you Annie the thought of it there and daily fear is something that is very hard to live with. My advice is to find a vascular surgeon that you feel good with... it depends on a few things whether they will recommend intervention ... age, family history, smoking (which is the worst thing you can do with this condition) also position of it. Do you have PKD? There is not enough awareness about the common link between this disease and brain anerysms.

Finally yes it’s better to know you have this as you can be monitored if you choose as I have been for the last few years.

Good Luck and let me know how you get on

Regards Andrea

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Hi sorry to hear you have an aneurysm, I'm greedy I have 6 lol I have to laugh or I'd cry. I'm here if you need to chat xx

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Oh bloody hell well i am happy with one 😂. Hope you are well xx

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