Just heard the specialists are not going to treat my aneurysm or at least not straight away. The only way I can cope is to change my attitude. Previously I couldn't stop crying every time I thought about my diagnosis and the potential for death or brain damage. Now I tell myself to accept the situation, trust the experts judgement and get on and enjoy life rather than wasting time worrying about something outside my control. What I can control is my attitude to life and it feels good to manage that. Though i still have my moments which i allow myself. Posts on here have helped me so much along with a sign I saw outside a coffee shop today 'one day your life will flash before your eyes. Make sure it's worth watching '.
Would love to hear from others who have been told they're not having treatment as an initial approach and how they're coping.
Written by
Andersl
To view profiles and participate in discussions please or .
Glad to hear you have found the place where you can park the fear. It is immensely freeing and will aid your chances of living successfully with your annie (as we all know stress is no good for our BP).
It will also give you a whole new lens through which to view life and I hope that like me you will find it richer, more beautiful, more full of colour, more amazing and more precious than ever before.
I was recently diagnosed with a brain aneurysm and the consultant want to see more /find out more by me having a CTscan. At moment my emotions are up Up up and down down down, my bp is higher than is good. I am scared. It is scary! Get on with life was the advice. I am finding it easier for some!
Then you're absolutely normal in the circumstances accept those feelings are normal as an initial reaction. Ive learnt it takes time to come to terms with the diagnosis and even there after you'll have moments when your emotions overcome you. Two things I've heard are helping me 1) learning to limit the time I gI've to negative emotions ie telling myself after a few minutes. That's it time up and switching to thinking about something else and 2) reading that it's ourselves (our own brains) that create negative emotions by thinKing about things that make us sad
Every day I practice managing my emotions bit by bit I'm getting better at it.
I wondered if you can give other advice? I am finding all of this difficult. Not knowing may be better? How do / did you cope with the waves of sheer panic? You may not have them of course.
How did /do you cope with having an unruptered aneurysm? Mine is 7mm and I am going for a CT scan late Nov so the surgeon can see more clearly what is happening and whether it has grown? How do you decide whether to leave well alone or elect to intervene by operation? Do you have any details about the likely outcomes of elective surgery? Sorry to bother you. I am just looking for help.
Hi Andhaz I haven’t got any answers sorry but here for you if needed My Annie was found in December 2016 by a mri scan then February had a ct scan and then in September I had a angiogram which showed it has grown?!! But in nearly 11 months I have not spoke to any doctor or surgeon I am still waiting but that’s another story. I don’t think a day goes by when I don’t think about it and do feel it’s taken over my and my family life’s
Stay positive and good luck and use this site for support it’s helped me xx
Oh yes. Feelings of sheer panic I remember them well! They're less nowadays but I still get them occasionally. I couldn't believe the neurosurgeons decided not to operate. I'd read up about the different options and I was convinced I was going to have some type of operation. However I'd also told myself I'd accept whatever the experts decided. So how do I cope? Well I took control of the things I could. I've made a lasting power of attorney, an advanced decisions and advanced statement. I've put all my key documents handy for my kids. So I've covered the risk of the aneurysm rupturing and me living with brain damage. I'd rather be dead. And what a nice way to go .... headache, collapse and die. So now I can be rest assured everything is in place and I can get on with life.
Yes I have decided no treatment if my aneurysm blows. I know it's not everyone's choice but it's the right one for me. I do feel for you . It is horrible. Another way I cope is knowing that people with cancer in remission live in fear that one day it will come back. So I'm comforted knowing I'm one of hundreds of thousands who live in fear. I'm not alone. My son summed it up nicely. He said life is for enjoying not enduring. Imagine if the aneurysm never 'blew' and you'd spent every day worrying. Try switching your thoughts when that fear starts to rise. The more you practice the easier it becomes.
It's come to this... a realization that one day we will die. We knew that anyway so that's nothing new. Now I've got all my documentation in order I can sit back and enjoy life. Hopefully it will be my aneurysm that takes me out. What a nice way to go. A headache then lights out. No long dreary illness for me I hope. Though who knows. .. i may be unlucky and my aneurysm may not be my friend then i'll be like too many others. Actually I prefer having something rare. It makes me feel 'special'
I Am so happy i am not the only one. Talk about good days and bad days. I’ve got a list of questiona aslong as my arm to ask the consultant. Mine is 5mm left opthalmic. The waiting game is killing me and i am getting snappy with everyone....
I had my appointment with the con sultan last week. I took a friend along. She wrote the answers while I asked the questions. The consultant was very patient and understanding. After a review of my scan and a further scan, he's going to put some coils and a stent in. For many patients whatever the illness waiting is difficult. For us though I think it can be unbearable. Although we're told the risk of rupture is low, we know too well what the outcome could be. We are well within our rights to have bad days. If anyone questions that ask them if they want to change places with you
That said, my consultant told me they don't get that many ruptured aneurysms admitted... and that's a top neuro centre!
Hi Anders last year i went to be assesed for a liver transplant for polycystic liver disease at the Queen Elizabeth Brmingham i passed the first stage but had to have a brain MRI as these cysts can develop on the brain , to my shock i was told i couldnt have a transplant as i have a small aneurysm on the brain!! and another small abnormality . i couldnt cry because i was stunned , i have an MRI every six months and if theres any change they will put coils in . i have been advised to keep my blood pressure down by having regular monitoring as i already take blood pressure tablets to avoid rupturing or enlarging . im having surgery on my liver(not a transplant ) may 30th iv been told theres a small risk of a stroke but iv agreed to take a chance i cant be left as i am as my liver weighs 20lb with the cysts . im so well looked after and i have a helpline phone number for the neurologist nurse if i get any worrying symptoms. they think my aneurysm is genetic . the irony is iv never smoked and i dont drink lol . i do get concerned when i suffer from the odd bouts of a headache which i never had before , i take each day as it comes and iv bought my little sports car which i always wanted and love lol and enjoying life the best i can ,sending you all my best wishes take care x
Hi, lovely to hear from you. What were the reasons for not doing liver transplant? That said, yes something does have to be done about your liver. Its jumped priority over the aneurysm (which may never grow/rupture).
Since i went on 'watch n see' ive developed cancer. I also had a failed attempt at coiling due to risk to eyesight.
In addition when they attempted coiling it seems some damage was done to my artery in my leg and now i have claudication!
Well i could sit and cry but whats the point ? Crying and worrying never got me anywhere. So i just keep weighing up whats important to me and what needs to be done and get on with it.
Ive pushed to get tests and treatment on my leg as walking pain free is a dream of mine and will give me such better quality of life. Oh just realised, i havent mentioned the histus hernia! Im pushing to get that fixed too. If the cancer comes back i'll deal with it at the time. As for the aneurysym.... i dont think about that... too much other stuff going on and again why worry... it wont help.
Aww thanks ,the transplant was to risky because of the aneurysm. and i have a heart problem and stage 4 chronic kidney disease unfortunatley cysts on them to lol , i was very lucky they found it before the operation or i might of been writing a different story .you have been through so much too but were fighters and thats what keeps us going .we have to laugh or we would cry. lovely chatting to you take care xx
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
accept those feelings are normal as an initial reaction. Ive learnt it takes time to come to terms with the diagnosis and even there after you'll have moments when your emotions overcome you. Two things I've heard are helping me 1) learning to limit the time I gI've to negative emotions ie telling myself after a few minutes. That's it time up and switching to thinking about something else and 2) reading that it's ourselves (our own brains) that create negative emotions by thinKing about things that make us sad
