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Brain Aneurysm Awareness UK
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Introduce yourself to the community

We’re excited about what you can go on to do for those affected by brain aneurysm. We hope you are too. Write something today about your experience and you’ll be starting your own online movement. And get inspiration from Nick York, another advocate in HealthUnlocked here bit.ly/hublog1

Great to have you here ;)

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WE at Brain Aneurysm Awarenessuk,have a face book page,we offer great advice,support,handy hints to help you cope with every day problems,as having a brain aneurysm is a life changing thing,for you 1st,and also for your family,friends,please come and join us and let me know,you saw this post,evryone is very friendly,caring,but most of all,,,, they all know just how you feel x I look forward to meeting you all x

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Hello everybody, this id my first time on the site. I have suffered a ruptured brain aneurysm.

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Hi, I'm new to this forum but I can't seem to find any type of accurate answer to what size aneurysm would be a danger? I know in the USA they class ALL aneurysms as a stroke waiting to happen but here in the UK it seems it's like anything goes!! I've suffered one SAH which has taken me the best part of ten years to get to some sort of normality to now find I have a frontal cerebral aneurism of over 7.5 whatever's with a sister one joined to it. My consultant only informed me less than 2 weeks ago but has allowed me until the 5th April to decide what I would like to do. He was prepared to put me on his list for surgery the day he told me about it which was a SHOCK to say the least but I couldn't make a decision like that after just been told of its existence. I had to have time to process what I'd been told. I know it's not a good situation to be in but with regards to coiling is there much after care needed does anyone know??

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At the age of 47 I suffered a SAH and Stroke after a brain aneurysm in April 2011. I left Addenbrooke's with acute expressive aphasia. It has taken me a number of years to speak and write fluently again. As I started to find my voice again came up with the concept of Storypath, see the web page for more information storypath.co.uk/

The project Storypath was devised to use storytelling for aiding in the recovery after a Stroke from a haemorrhage. Helping to improve communication between families, survivors and health care practitioners. I have got together a team of Storytellers, Ilustrator, Animator and eBook designer ready to work with families and survivors to create the story. Storypath is now looking for funding to make it happen!

Storypath has a facebook page too:

facebook.com/storypath.stroke

Any advice on where to go for funding would be appreciated. I am not personally aiming to make any money from Storypath. Once the eBook has been created I want to give it away free to the NHS, Headway, Stroke Association etc or anyone recovering from a Stroke. Recovering is long, hard and can be very lonely. If Storypath can help that journey just a little that would be amazing.

Alice

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Hello,

Would appreciate your help. A friend on mine, lady, had a stroke and a brain problem, (sorry do not know medical term), had a operation of the brain. After all this the left side is paralysed, speech is ok, eye site difficulty and memory ok, all happened three months ago. Left hospital end of last month, in bed at home, three carers came during the day, one in the morning one lunch time and one in the early evening. Family is struggling to manage. How can we help to improve the quality of living? Any offer of help will be appreciated.

Thanks.

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Hi Bala,

I am sorry to hear about your friend. Finding help is difficult. The Stroke association might worth going to ask for help or Headway:

stroke.org.uk/support/search

headway.org.uk/home.aspx

Good luck

Alice x

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Thanks.

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Hi,I am a survivor of brain aneurysm...it was 24 years ago the rupture of my giant aneurysmic subarachnoid hamorragee I be got the mild form and my gp said that my condition is stable... How he knows?never cared so much about me...I don't have any evident physical impairment, but he undervalue emotional and psychological issues...well GPS are not trained for that...this is their answer,but they d not even ask other professional about it...there is lack of information and knowledge... The invisible disability has been defined

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We have a amazing fb support group page, please come and join us xxx

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We have a amazing fb page, please come and join us xx

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Hello.

Ruptured aneurysm on Anterior Communicating Artery 28/2/15, subarachnoid haemorrhage with hydrocephalus, drained, and rupture coiled.

Critical care, then neuro-intensive-care, then neuro-ward, I was discharged 2 weeks post-surgery, and appear to have made a startlingly good recovery. I say 'appear'. I'm in no way as significantly impaired as some aneurysm survivors, but the scans did note two further, smaller aneurysms, which may require future surgical correction. The major impairment is the bloody anxiety about the potential time-bombs in my brain. I'm due an MRA in about a month, to check the positioning of the coils, and the progress of the remaining aneurysms, a further Consultant appointment roughly four weeks after that will advise whether surgery, or conservative management is advised.

Everyone thinks I'm some sort of walking miracle, to have come through such a significant event 'unscathed'. I've lost part of the sight in my left eye, some of the sensation in my left leg, I have a pretty constant headache, and constant vertigo, that peaks to a point where I have to grab hold of something, to assure myself that I'm not actually spinning.

I'm irritable, I was irritable 'before', but now the fatigue, and the second-guessing every little ache, twinge, and unusual sensation is REALLY taking a toll on me. I don't want to be wrapped in cotton-wool, and treated like a glass princess, but the fact that I'm up and about, and as coherent as I was before has sort of masked the enormity of what happened. I don't want to scream "I had brain surgery, you know!" at people who are excessively demanding, or just plain lazy, but I'm getting close.

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@Gaia_rising i feel your pain. You have just expertly described how i felt before my coiling. I found a counselor who saved my life and my sanity. I cried to him because i couldn't cry to my family. They were already so stressed about me. Part of my work with the counselor was to make a will and plan my funeral with my family. That sounds monsterous and it was but after that we could all be honest with each other. The unspeakable was now out there. I had no intention of dying so we were able to joke about it. Years have passed now and I'm still here. Eventually I had to take antidepressants to keep from folding in on myself. Remember "this too will pass". I hope you find your way. Please feel free to message me anytime. I totally get you.

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Hello Jennifer53 I've come a long way since that post, and sort of two-steps-forward-three-steps-back fashion. The second largest aneurysm was coiled last March, the third one's still in there, planning to take over the world, or plaiting lettuce, or whatever aneurysms do. I was doing a fair impersonation of 'getting on with it', and then I wasn't, which has been exceptionally hard for me, because not-getting-on-with-it has never been part of my nature.

I thought I'd 'accepted' my limitations fairly early on, but what I'd actually done was treat my physical and neurological health the same way SOME people treat their emotional health. I pretended I was OK, and I told myself 'I can do this', even when 'this' was re-wiring the lighting circuit in the house, or going on an impromptu night our in Leeds with a load of strangers from the internet. (I was 'difficult' before my brain injuries, I'm near-impossible sometimes now.)

I try not to post on here when I know I'm 'down', because I don't want to drag other people down with me, but I do think that's part of the overall problem with our invisible illness, we ALL try to be positive, and give the 'you can do this' encouragement. (I'm not snarking at you, it's just an observation, based on how I behave, please don't take offence, I have the will and determination of a concrete bear, I know I'll come through this icky phase.)

The anxiety and what's-THAT about every new ache, pain, twinge or new-weirdness are background noise, now, part of the new-normal, everyone who was part of my world just got used to me needing to leave rooms where it was too loud, or taking weird circuitous routes to places because the light 'made my eyes feel sick'. In all honesty, I'm not coping very well right now, and it's been the Devil's own work to be allocated a counsellor, due to the NHS sort of passing me around like a big, ginger hot potato. (Disabled, separated, unemployed AND ginger, the universe has it in for me...)

We'll get through this, all of us, it's just not very joined-up in terms of support and medical teams and such. Current events in the media indicate that's not likely to change any time soon, and we might need to fight even harder, but we'll keep fighting, and we'll come through.

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Hi Gaia,

This is like writing to myself. I too am still struggling with all the swings and roundabouts post brain injury, but like you Im telling the world Im fine. It took me months to be honest with people about having to leave shops and rooms because the lighting was either too bright or too dull. My family are so afraid Im going to die any moment I dont feel I can be honest when Im having a shit day. I too am a ginger and just when I accepted the colour of my hair and began to love it, the colour began to fade. (overmedicated on brain meds) Off them now almost a year and my hair is lovely and ginger again. I love that all my friends are going grey and Im still shiny ginger lol. I dont know if we can swap email addresses on here but Im going to try. ginnydespinner@gmail.com. If you ever need a rant feel free to email me, I think we have a lot in common.

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Hi Jennifer53

Just seen your post although it was a while ago now. Im due to have endovascular coiling at the end of April and the dread is getting worse every day. I’ve done the ‘watch and wait’ thing for the last 4 years but my present vascular surgeon (I’ve had a few) does strongly recommend it because of family history rupture.

I too have consulted counselling now to try and deal with the mounting anxiety of admission to hospital and the procedure.

I’m struggling and sometimes feel like I’m drowning in panic but know I’ve got to go through this to prevent something worse. There is no answer now as I’ve looked on every sight. Watched lots of professionals in Webinars on the Internet and tried to make sense of the jargon in studies. But the terror of impending surgery is like a ton of terrified brick weighing me down each day and early hours of the morning and silent hours through some nights. This is a condition that really causes the feeling of isolation as on the surface I look strong, happy and well and blessed with a ‘lovely life’ working through midlife.... but inside I’m a quivering wreck!!!!

How are you doing in your recovery and do hope life has settled into a calmer phase for you 👍🏻

Thanks for listening to my rant!!!

Regards Andrea

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Hi Andrea,

Honestly the coiling is a doddle. I was home in my kitchen next morning having breakfast before 9am. I researched it to death before the op. Im one of those annoying people who needs to know everything beforehand. I desperately wanted the op asap because I was so frightened it would burst. It felt like going about my life with a sniper training his gun on my brain. I have another one that gets checked every year. it is sealed with a clot. I worry a little about that but I have decided to trust my Doctor. I had some optical distortions about a year after surgery (so dont even know if its related). This is cleared up now and I feel fantastic. `

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Hiya Jennifer53

Thanks so much for replying and yes I’m just like that Ive delved until I can’t delve anymore and there’s only one thing left to do eeek!!! We’re you on blood thinners? And where did you get it done?

I also have another 3 which are going to be closely looked at my surgeon is doing a cerebral angiogram with contrast dye when I’m under... the anxiety is particularly bad today for some reason but you post does help keep in in proportion.. I’ve had this stress for 4 years and in that time my friend sister had a fatal one.... terrifying. Much better to get it sorted before it goes.

Kind Regards and it’s nice to hear a positive outcome👍🏻

Andrea

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Andrea I had mine done in Dublin Ireland. The doctor did not put me on warfarin until after the coiling. But if you are on an anti couag they will look after you before your op. It is a scary time but think of the relief you will feel when you come round from the procedure. I had to lie still for a small number of hours to allow the plug that sealed the artery they went into to heal. I did have an aura (visual disturbance) that day. Its like a silent migraine so I vomited a few times and then I was fully back to myself. No after effects. We are all different but fear is something we all share. Ps the metal does not show when going through security scanners. I was really afraid I wouldnt get through the airport. My first security scan was in a prison (as part of my job I visit prisons). I told the guard if I beeped it was because of metal in my brain. He just laughed (im sure he thinks Im mad) It didnt beep. neither did the airport or the courts scanner.

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Hi Jennifer

Strange as I worked on the switchboard in a prison before I retired.

Yep defo a scary time and one I’ve been totally dreading. I’m under a Neuro unit in Liverpool and know I’m in good hands but so terrified of hospitals ., feel like I need a knock out drug to get me in there!!!

Did you have any pain in the groin afterwards? It is a comfort to hear from people who have had it done although I know everyone has a different experience.. it is amazing what they can do isn’t it! Bet that was a strange feeling with the aura... think Ive heard this before on this site. 😀 nice to think I won’t set the alarms off in the airport... really want to be able to get on with my life.. must be a great feeling👍🏻

Andrea

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Hi Andrea.

Do you have a friend or family member that can go to the hospital with you. There was no pain in the groin after. In fact not even a scar. I looked but could not see anything. The medical staff are amazing. It was a young woman who done my coiling. She was running late so I had enough time in the theater to have a good look around. Wow it was like some futuristic science fiction lab. It reassured me that they have everything they need to help me safely and efficiently. Think of the relief you will feel when you come to. The relief you get after your next MRI to be told yes the coils are still in position and the blood is flowing past them safely. Remember its ok to be scared. I will probably be back on here if they decide to coil my other one. I wont be as scared as the first time but any hospital stay is traumatic. Good luck and get better soon xx

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Hiya

Yes I’ve found a great person who works in the Walton Centre and assists people with Head issues and support for their families. I’m seeing her hopefully next week to have a coffee in there and possibly go up to the ward. Think it will give me a feeling of being in control of the situation rather than the fear controlling me!

My husband is a great support too which helps though this journey has to be done alone... he’ll be there on the day though and when I wake up. I’ve warned him that there is possible issues afterwards.. balance or speech, vision etc or maybe none of these!!

That’s great that you were able to go and see the theatre it is amazing as I e watched the procedure on you tube and webinars lots. Sitting there with heart racing biting my nails to my elbows haha!!

I guess you be more confident as been there done that if you have a coiling again.

It’s the thought of it that scared me how on earth do they get from the groin to the brain without an issue.. how does that guide wire not get lost!!!! If I could do it myself I would haha.

Thank you for your support and advice it really is a comfort to speak to those who have gone before... I will be ranting a bit more in the coming days and weeks... stand by !!!

Andrea xx

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Hi, my name's Doreen, I'm 61, and I suffered a ruptured cerebral aneurysm at age 16. No warning apart from a slight headache in the morning apparently (I say apparently because I thankfully cannot remember anything about that day). I was going to follow a sports career, so had been training in the afternoon when I suddenly collapsed in the changing room. I spent more or less the next 9 months in and out of hospital with various complications following the clipping of a large AVM and aneurysm mostly due to a resistant infection (probably a precursor to MRSA), and hydrocephalus (the shunt kept getting infected...

However, I am still here today and apart from the hydrocephalus and left sided limb weakness...and did I forget the short term memory problems LOL... I am a strong advocate of ANYTHING that will prevent anyone whose aneurysm is found before rupture, having to go through what I did! A lot of which I CAN remember and would n't wish on anyone else. If I can answer your questions I will. God Bless.

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Wish I had known about this group 2 years ago when my aneurysms were found after a stroke caused by a blood clot. The doctors called it my stroke of luck. without it the aneurysms would have went undetected eventually bursting and probably causing my death. I was lucky to have private health insurance at that time so my coiling happened 3.5 months later. I was also lucky to have been admitted to the top Irish head trauma hospital. My coiling went well. I did have a bad aura for a few hours after the op but never became a migraine. I left the hospital next morning at 8am. I was only there for approx 24 hrs. I was so scared during that 3 month period awaiting my procedure. I likened it to walking around with a snipers gun trained on my head. Not knowing when the shot would be fired. My husband and daughters were afraid to leave me alone in case it happened and I could not call for help. Just want people to know that coiling is quite a safe procedure. There are risks but the benefits outweigh the risks. when I was informed I had them my first concern was omg they will shave off my hair to operate. What will I do. there are no wigs to match the colour of my hair (red). Only I could be so vain.  If anyone wants to ask me anything please message me. I am happy to help if I can 

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Hello, hope your still doing well after all you have been through. I have a 6mm brain aneurysm on my left side I am going to see the consultant on the 14th July I have been told that a aneurysm less than 7mm is advised to be left and observed I have been told I will be given a choice either leave it or coiling. At the moment I just want it sorted but wondering what you think would be best I know everyone is different just wanting some advice. Many thanks

Pam

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This is not one that anyone can advise you on. Every case is different. For me I could not get it coiled fast enough. I felt as if I had a bomb in my head and it could explode at any moment. I felt safe after a successful coiling. I began having visual disturbances about a year after or but the doctors did not associate it with the coiling. That has all settled down now. Any op carries risks so I'm afraid only you can make this decision along with your neurologist and surgeon. Best of luck whatever you decide

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Thankyou for your reply was wondering how big was your anseryuam when you had it coiled.

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I'm afraid I never thought to ask but if they are large then it's a different procedure to bypass it. Google it. I remember watching the procedure on a health website. It's amazing. I had 2 aneurysms. One of them was blocked off with a blood clot. (Probably the one that caused the stroke) I love telling people I have platinum in my brain. I feel so much safer now. I couldn't imagine living a normal sane life knowing it was there untreated

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Mikey 123 research as much info on coiling to help you make your decision. I knew the risks before my coiling. So did my family but they knew it was my decision to make. There are risks but there are risks not doing it also

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Hi After your coiling how long were you before you was allowed to fly?? I mean short haul like 2-3 hour flights or has it not been attempted or mentioned at all?

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I had a holiday booked to fly the week after my coiling. The Doctor suggested I would be better to wait a few more weeks, so I flew about 6 weeks after coiling.

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Hi I'm new to this I'm 57 year old woman and had a rupture aneurysms in 2914 with only 2 percent chance of servival but proved them wrong just wondering about flying what do people think

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Hello, I had an aneurysm clipped in December. I posted something a couple of weeks ago about this, replying to some one thinking of going holiday after an op. I'd asked at a support group about flying and the specialist nurse said that after a couple of weeks it should be fine. Another person said they had difficulties flying, especially when going in to land. Ask your consultant or nurse specialist, they will have details of your case and will be able to advise you best.

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None of us here can answer your query. Your doctor is best placed to do that. If you have had clipping, your doc will know how successful that has been. If you are told you can fly then you may be just feeling nervous about doing so. Then my advice would be to take a big deep breath and jump in. When we survive a major blow that brings us close to death we are often left with trauma. If this is the case please do find a good counsellor. You deserve to live your life to the full.

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Hi, I'm very new to all of this. I had an MRI Sept 15 and it showed a 7mm ICA/MCA near the Right optic nerve. Two weeks ago, I had a CT with angiogram that showed the anni is now 8mm and that I also have a smaller 3 mm on the left ICA at the cavernous point.

I see the neurosurgeon on Nov 23rd and it feels like forever away although it's only a month.

I've had two concerning episodes, one last week with a severe headache and three months ago, my daughter and her boyfriend found me sprawled on the floor, I was incoherent and had bashed my head which leads me to believe I passed out and didn't trip (as I didn't protect my head).

My mother had an aneurysm rupture with a SAH at the age I am now.

Needless to say my thoughts are jumbled and swirling at the moment but I'm very glad I've found this group.

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It's good they have found your Annie and treatment can be planned as yours may be hereditary and you have a bettr chance of avoiding rupture. Use this waiting time to write down your questions and find a good friend who is willing to take notes to go with you

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