A question for all you good people who’s (anrysm ) did NOT BURST!!! My aneurysm has just been coiled thank god! But basically I was sent home with no information about what/how/ I’d feel. If it’s a normal feeling and so on. Even not knowing how long I keep support socks on. Also the emotional side of things. No help what so ever other than your gp saying. Great it’s been fixed....but what about the fear the utter mess it’s made of me as a person while waiting months to have it fixed. What do I do now. I’m free of death yes I’m truly blessed. But I have been effected to the point I had to plan... what if I die... now I’m ok. But my emotions haven’t seemed to realise I’m ok. My point is There is lots of support for people who’s aneurysm Burst and rightfully so! But where is the support to help likes of me who lived with a bomb in my head feeling I could die. Changing me as a person. Where is the help please. Gp see you as fixed hospital send you on your way. Anyone experienced this /did you find help. Sorry to go on. But my own emotions are confusing me. I’m not sure if this is right. Thank you and sorry to go on. I had my coil fitted five days ago. I’m feeling fitter on the out side but not on the inside if that makes sense.
Coiled anrysm : A question for all you good people... - Headway
Coiled anrysm
Peppy, I'm sorry your struggling with this issue but I can assure you that after 8 weeks of great hospital care when my aneurism burst, apart from one check up and MRI, I was discharged with no aftercare whatsoever, and this is all too often the case. And once an aneurism has haemorrhaged the after effects are debilitating and life-long.
I had to fight for 3 years to see a neurologist and endocrinologist to investigate troublesome symptoms and now, 6 years on, I'm only allowed an appointment with the neuro every 12 months.
So please, take the life which has been rescued by your wonderful surgeon and live it to the full. After a bleed we must say goodbye to ours and adapt to a very different one.
But if you're having trouble moving on, then perhaps your experience has caused lasting emotional trauma (PTSD), and maybe asking your GP for a referral for counselling is the way forward. We're pretty good at analysing our emotions if encouraged to talk them through in a structured setting and, once our fears are laid bare, they usually lose their sting. 😖
Take care, Cat x
Hiya Peppy
I’m so glad you’ve recovered and getting stronger your truly lucky to be on the other side of it all. We said at the beginning how isolating this feeling is of knowing what’s inside your head and what could happen... the feeling of being different from everyone else and sick of the fear. Over the very long and fearful 4 years I too have been amazed how little info and understanding there is about unruptured anerysms.
We are not in the world of people who anerysm ruptured but not in the world of people who don’t have one either. The feeling that fatality is just around the corner is a rock and hard place to live with... I know!
One thing you could do now is help raise awareness as certain health conditions cause brain anerysms mine being one of them PKD but there are others too.
I think as time passes and the fear of all you’ve been through with the car accident too. The fear of surgery and the injust situation of how little assistance and information you received you will emerge a calmer person ready to grab life again. Probably take a while but as you wake up everyday without that sinking feeling you’ll be counting your blessings!!!!!
Perhaps a bit of PTSD councilling will help accept all this and put it into a ‘box’
You’ve done so very well... be happy in your safe little brain and enjoy everyday.!! Xx
Andrea
Hi Peppy , did you ask these questions?
I know in the whirlwind of relief at being released from hospital most people just dont ask.
So now you have to ask your GP or the Headway helpline.
Situations like yours can leave you suffering from a firm of PTSD so ask for referral to a counsellor and get all those feelings out.
Its not as easy as just getting on with life, so you have to learn how to do it xxx
And well done, tou will be fine itll just rake a little time.
Janet x
My gp said. When I said I’m feeling a little depressed and sort of numb she just went oh no you should be happy now your fixed up!!!!! I didn’t say no more and just felt worse. This was three days after coiling. Also when I’ve as my gp before operation about Annie. They just say sorry it’s not my field. My Sergeant an hour before sent home came to see me and just said. Right you can now do everything you did before this happened. Traveling driving And smiled. Off he went. This was a day after operation as I was sent home had operation Monday 9-30am home Tuesday feeling dizzy bad head ect by 3pm. Thinking to myself... has this just actually happened. Ha ha. Brain surgery yet I’ve nothing to answer/read /talk too. Crazy.
I know its hard for people to understand just how badly we get affected by these issues, even the surgeons. So its up to you to push for the things you need to help you get to that place they assume you are now in.
Trust me , counselling will help, i know its been suggested by others. I was sceptical and thought I didn’t need it but i eventually had to cave in and ask for it and I did not have to wait long i was seeing a counsellor within a month.
Dont try soldiering on just because someone says you are fine now, what do they know really, have been there themselves ?
Janet x
After the multiple traumas you have had these last 6 months you might be locked in a 'flight or fight' state, wih too much adrenalin pumping round your body, leaving you on high alert all the time. Physical effects of that are many and various. Mentally it will leave you feeling uber stressed and unable to calm yourself. Counselling will help and you can get up to 12 weeks on the NhS although it might take a while for a referral. There are other things that you can do yourself too in the meantime to try and re-set your emotional levels.
Try a yoga class, length swimming, relaxation programmes - anything that will help you to breathe deeply for sustained periods. Yoga is particularly good, as you can follow up the class at home.
Take yourself off for long walks in the countryside and watch nature - being safe (and awe-filled) in nature will give you back a sense of your place in the world, and the ground under your feet will ground you again. Go barefoot if you dare!
Meditate if you are able, or pray if you believe (and even if you don't...)!
And finally take time to accept this. Acknowledge to yourself and know that it will take time for mental healing to take place. Just because the medics went in and went 'wham bam thank you ma'am' doesn't mean that your response needs to or can follow that pattern. A near death experience is not a minor thing and you don't absorb it all over a cup of tea. You will be radically changed by this experience, and the ramifications of it will take time to come through.
But for now, just breathe deeply and relish every breath you take. Life is good...and I speak as one who continues to live with her inoperable remaining annie still patent and the prospect of two-yearly neuro-angiograms for life.
Being where we are and having been through what we have, we wake up to see brighter dawns than most people, and that is an incredible blessing.
Oh thank you for all your wise words they seem to have an calming effect on me just by reading your words. Thanks so much. Maybe you are right maybe I’m still on fight r flight. Something isn’t right. I don’t think my brain has even realised I’ve been fixed. I have to sort of tell myself. It’s ok Karen it’s fixed your not going to die. And dear me I don’t no how you stay the way you are knowing your Annie can’t be fixed. Your so brave I wish I could just snap out of this. Feels like I’m not in control of my thoughts. Meaning...why am I not feeling safe happy and grateful? Why am I still feeling down at times not really living just going through the motions of getting up eating. And doing as husband says like. Let’s go for a drive ect. I’m gettyfrustated at myself. Anyway thanks so much. I’m not going to post anything more as I don’t want to be negative. I wanted to be the person to encourage people with my positive outcome (anrysm being fixed). Once again thanks for all your wise words.
Hi there again
Glad to be helping. Everyone benefits from a bit of help navigating hese stormy waters. You are not alone in that.
Please just go easy on yourself and take things as they come. Don't expect healing to be quick - body, mind and spirit all take time to heal, and that is perfectly ok. It is ok to feel how you feel now, Peppy, really it is. If you were still feeling like that in 2 years time you would need to worry, but right now, it's ok.
Your thought pattern does and will change with time. I had to wait several months in between them finding my annie (which had been missed on scans some 5 years earlier and only picked up when I changed hospitals) and them trying the only available treatment - a stent. Throughout all that time I was terrified and couldn't wait to get shot of it. After my second set of scans when the surgeon told me he could neither operate nor coil I broke down so badly that he rang me at home that night to check I was ok...
When they told me 6 months after the procedure and after my 3rd angio that the stent had been only partially successful and that I still had a 5mm bubble on my eye artery I was not surprised. It was always going to be a long shot and I knew it was still there since if it had closed I would be blind in my left eye. My next angio is in 4 months time. I am not expecting any change.
But emotionally I had moved a long way in that time. I am no longer terrified. Like you, I too had a breast cancer scare, just before Christmas. My lump is benign, but it did rather make me think 'here we go again...God, this is starting to feel like I am being picked on!' But the terror of it all, that has gone now. Life is for living, there's glory in every moment if we just rake the time to find it - and we are nothing less or more than any other mortal in the fact than when it stops, it stops.
The other bit of my back story is that on Aug 9th 2010 I went from being a normal(ish) working mum reaching the top of a pretty good career to a bedbound invalid overnight, struck down with a mystery illness that was eventually diagnosed as ME (topped off with a Functional Neurological Disorder of gait that disrupts my walking). It is only in the last 18 months or so that I have been able to walk properly again on any kind of sustained basis. So I have kind of learned that there is only really one way of reacting to what life throws at you if you are to get through, and that is to believe that actually, you will get through.
I've been amazed by the power of my faith, by the physical and emotional resilience I would never have imagined I could have inside me. I have been so buoyed up by the love of a few very special people around me, and I honestly do mean it when I say that the last eight years, (the ones that have been minus the whopping salary, the big house, the flash car and easy come easy go lifestyle), have been the best of my life. I wouldn't take away any of the 'bad' things that have happened to me.
You will, I promise, reach a point when you look back on this and it all makes some kind of sense, or you can see something you gained from it, or how it made a difference to you. You might not be there yet, but you will get there, and you will know a wonderful sense of peace when you do. Just trust yourself to get through.
My goodness you have been through so much yourself your amazing to come through it all the way you have and if I was you I’d be so proud of myself. I take my hat off to people who fight against all odds and you are one of those people I’d thought I’d be ....a fighter I wish I was that person I thought I’d be. I will never give up. But right now just finding my way through mixed emotions fears happiness worry let down. And not sure where to go from here ... ! My job you see is looking after and supporting people with disability’s. I need to have a smile on my face always and be up beet and on the ball you could say .. right now I can barley decide my next thing to do today for myself never mind work to the best of my ability. I’m due back in a weeks time. I’m thinking can I do this can I hold myself together I just feel now maybe this job is not for me. I need a not so demanding underpaid job and find a job to help likes of us on here. Us who haven’t had somebody at the end of the phone to say. ( what you feel) is normal ect ect. I find this whole thing of being pushed out the hospital with no support disgusting thank god this is here for us and people like you and others are here for each other I think it’s what has made me feel not so alone ... sorry for blabbering on. I’m tired and just think thank goodness for people like you who feel like I do and many other people do. I now really want to find a way to do more for likes of us in my local area when I’m healed more. Maybe my aneurysm brought me here for a reason who knows. Thank u for replying.
Hi Peppy
It’s a bit of a rocky road your on isn’t it but I’m sure things will smooth out soon. You’ve certainly been on a massive journey with everything and don’t forget your still our pioneer even though your going through this stage which I guess is one of many.
You mentioned headaches... I don’t suffer these and to be having lots must be debilitating and making you feel down. Sometimes you may wonder if you’ve done the right thing. Well I’ve done the watching waiting and monitoring with MRI for the last 4 years and no further on with accepting the fear in fact it’s worse. The other thing that I can’t forget is watching my very good friend pass away at 56 with a fatal haemorrhage 3 weeks after Id found mine. What would her advice be regarding surgery if she could have been fixed. Also my dear Mum 30 ago when unfortunately screening wasn’t around.
I know your struggling with this but one day you’ll wake up and thank God that you have and will do everyday unlike lots of others who’s lives are in limbo. Give yourself time and your still a great help to me and others who are awaiting the surgery that you’ve been brave enough to have.
Stay well and be good to yourself, if it means finding another job well maybe that’s the destined path your meant to be taking.
Take good Care
Andrea xx
Thank you Andrea. I’m trying not to post on here. As I feel I’m being negative and I really didn’t want to be that way!! I tell myself how lucky I am. Often. Because for some reason my brain keeps forgetting I’m fixed r Just is in the same fear mode and not realised I don’t need to be. Because I literally have to say. Karen your ok now. Strange eh? But the operation is the best thing I’m definitely sure of. I’m sure it will be for you Andrea I’m so sorry you lost people in that way it’s sad and scary. For me the new symptoms are very scary. I wake up each morning with very bad head. Now also the base of my neck has been a very painful thing for days. Not sure if it’s a muscle r nerve thing due to maybe being moved around in operation. My throat is healed now from the breathing pipe so I no I’m on the mend. Haha. As for job. I’m nervous to leave as it’s all I’ve ever done and at 50 not sure many people would want me or to learn me a new skill unfortunately. But yes thank god ive had the opportunity to be saved and thank god you and lots of people on here will too x
Defo a time for change perhaps but from what you’ve been through it’s going to take a good while to heal, mentally and physically
Your aches and pains probably don’t help but some could be the great 50+!!! Time of life which carries all sorts of strange things to happen... I’m 57 OMG where did the years go!!
The neck pain could be stress or as you say the pulling about on the table.. if you’d read up and been on as many anerysm sites as I’ve been on the last few years it’s very common to have headaches for a good while after as it’s like getting a bad bruise.. it’s gotta heal but I defo agree there is not enough knowledge out there about the after effects. We have to do our own research but yknow what..just try to relax you’ve been through the hard bit and please don’t feel your being negative as this site is for being honest, to share and off load.
Try to have a good day and do something you like to do... be good to yourself even if it means being selfish☺️🤣xx
Peppy
I am sorry to hear you feel like this. It’s been an exceptionally emotional time or you. This time last week remember how nervous you were. It’s all happens so fast and you haven’t had time to catch up. Breath, relax and find the very best people you can to talk to. (Friends.) GP’s are far too busy and know nothing about aneurysms. Could you call the surgical nurse of the neurologist ward and ask them. Counselling lots of people have suggested. I totally understand as I am only a few weeks behind you on my journey so as of yet don’t know I will feel.
Thinking of you x
Hi again Peppy,
Firstly, I'm glad to hear you got through the op.
I know exactly where you're coming from.
The same happened to me 5 years ago, the terrors of finding out about this bomb in your head, being told if it bursts " not to worry, as due to the placement of your aneurysm you'll just feel a sharp pain, after that you won't feel anything as it would be fatal". The whole drama of the OP taking 5 hours instead of 2 due to complications. Being told that you've done well as the other 5 OPs that year that were just like yours, you're the only one that has survived. ( oh yeh, that really helped. ).
Then given a little shove after a week in hospital and told, off you pop, you're all better now.........................
Hello ! Is anyone there ? My head hurts and I'm frightened.
Sound familiar ?
It’s awful. They really need to look at this. I have such bad heads right now. Mostly through the night and waking up to bad head too
After 5 years it's barely got better, I still get woken up by sharp twinges turning into real cracking headaches, it seems to be the norm now. It is scary on so many levels and life will become a rollercoaster of pain and mood swings. BUT..you can also look at life with a " I think I will" kind of attitude. I've done more and seen more than most have since my op. Whilst in pain I've swam with a dolphin and manta rays, had a helicopter night flight over Vegas, seen the grand canyon, stood above the clouds on the top of a volcano and eaten what the hell I wanted, when I wanted. We've both been dealt a crappy deal in life in the way of a scary self made aneurysm but the question now is..........what will you do next, sulk and worry or make the most of your second chance. ??????
From someone who has been there, you'll be afraid at times BUT you'll also really appreciate the good times and want more of them, try your best to focus on that, keep your strength up and your humour and remember one final thing, it could be worse, you could be a man !
Try to read some of my earlier posts, I wrote a few to cheer someone up, it looks like you could do with a giggle.
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