Brain Aneurysm Support Community

Newly diagnosed, scared, dont know what to do, please help?

#1

Hello, my name is olivia and i live in berlin, germany. i am 36 years old, i have a 3 year old son and since 2 weeks i know that i have a 1cm aneurysm.
the neurosurgeon told me that i have to clip it in a open brain surgery and i am very very scared. the last 2 weeks have been very hard, since i on one hand am so glad they found it and on the other hand i am so sad and scared. i started this year with so much energy, finally started to feel like myself again after the birth of my son, going back to acting classes and trying to focus on a career and be free again (my boy just started going to daycare and it’s the first time in almost 4 years i feel like i can do something again).

what is hardest for me right now is that first of all i suddenly seem to feel and be so sure that i’ll die. and that scares me so much. i dont know if i know something deep inside or if this is just a psychological way to deal with the possibility of death to prepare me to the seriousness of this illness. i just deep inside feel like im saying good bye to everyone…
the truth is that i was never sick, never had something serious and noone in my familly every really did. i am healthy and young and strong or so i though. i have trouble dealing with life after birth already, my body changed so much and i feel like i lost so much of what i identified myself with by getting pregnant (and that was a wonderful and beautiful ecperience, so how will i be able to cope with the changes after something like this?).

i am scared that it will change me so much. and i am so worried that i’ll lose the rest of my “best years”, you know what i mean?
i also dont know how to handle recovery with a 3 year old :slight_smile: and we dont have any family here in berlin. i am swiss and canadian, my husband is israeli. they are all far away. and i react very sensitive to medicine, who knows how i’ll react on brain surgery?
my aneurysm is pressing against my left optical nerve… anyone has experience about this spot? how big are the chances on big neurological deficits and long term problems? like epilepsy or will it affect my speach or language? will i still have a good short term memory? and i know this sounds very superficial but how does the scar heal and will my skull still look the same? the problem is that i am an actress and he wants to cut a piece of my forehead out. but with cutting the muslces and nerves there, my mimic will change no? and im worried about my ability to think and talk fast, learning text by heart and also i worry about confusing languages. can this happen? i do speak 3 languages daily but not everyone in my environment understands all of them so will i speak the wrong language to my husband, etc.?
i am sorry for writing so much, even more so to write another post with actual serious questions. to be honest i feel just so alone with all of this. all i get to hear is that i have to be positive and it will all be fine but thats not how i feel. and since giving birth i also dont feel as strong as i used to, frankly i’m constantly exhausted and my immune system isnt great anymore either…
i reacted with quite some physical trauma after giving birth and it took me so very long to halfway feel like myself again. and i react very strong on medicine (i never took anything else than ibuprofen, paracetamol, advil and maybe 2 or 3 times something else and 5x antibiotics…). will this shake me up like crazy?
last but not least i suffer from strong panic attacks (i am seeing a psychoanalist since some years now) and i am VERY scared of vomitting. and i hear over and over that you vomit after the surgery and that REALLY scares me and i know i should be more scared of other things, rationally i do but emotionally i am REALLY scared of that. and of being intubated and dying.
oh and i dont know at all how to deal with all of this. do i have to write a will? a letter to my family and my little boy? sometimes i think i should make a video for him so he’ll see me how i was before, in case i do have some damage after the operation but to be honest i cant even think about that, i cry so much just imagining this. 2 weeks i was very rational about it all, informing myself and trying to deal with it but since yesterday i just cry all the time. i am so sad and so scared. i dont want to die. i dont want to have neurological or physical damage. i wont be able to deal with that i think.
and do i have to run around germany and figure out which doctor is the best and talk not only to the neurosurgeon but also find someone that will do it endovascular? can this aneurysm be treated endovaskular and did the neurosurgeon say no because hes more specialised or is it really safer to clip an aneurysm?
im sorry. this is really alot and i am all over the place. sorry.
and thank you for reading and all the best for you all. olivia

#2

KHi, bless u, u are all over the place , I didnt have clipping I had coils as I had a brain rupture 3 years ago on a 8mm Annie , I still have 2 but they are watching , one is 2mm, and 3mm, it is scary , and u do think about ifs, and buts, try not to worry and listen to what the doctors and that say to u , I am confused at they are wanting to operate as it’s only 1cm, as my other two was their when my other ruptured but they didn’t fix As was only small , but they must have good reason to for u , what ever way u look at it its going to b scary , what I say to myself is what ever is going to happen will I can’t change it so while I’m ok I just have to keep myself stress free , and I don’t mean everyday stress , I mean added stress that don’t need to b , my recovery from my rupture i would say I’m 70% back to me again so I can’t complain , I’m 42yrs old and I was 38yrs when it happen , it just made me grow up a lot quicker lol eg, I thought I was the best dancer in town on a night out , now I don’t even go out or drink , but I’m happy and still here to watch my children grow so I really can’t complain , hope everything goes ok for u , take care and b strong :relieved:

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#3

Hello Olivia,

You’re very lucky that they found the aneurysm before it burst. My mom had a burst one and another they had to clip and she was not waking up for a while mainly because of the bleeding on her brain. She is now home, doing therapy and getting back to her normal self. Just think about how many of these procedures the brain surgeons have done on other people that have been successful! As far as side effects, everyone is different. My mom also had a stroke because of the bleeding and she was in a hospital bed for so long she lost some mobility but everything is coming back! Also, her hair covers a lot of her scar and there are other cosmetic surgeries you can do when all is said and done.

Do not be afraid to ask the doctors, surgeons, nurses whoever any questions at all.

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#4

Hello Olivia. I think only a super hero would not be afraid of an aneursym diagnosis. You certainly are all over the place. I was too. My doctor prescribed a mild seditive and that helped a lot.

I was blindsided by my diagnosis. I was healthy, other than some strange swooshing noise in my ear, and frequent headaches. Two weeks after diagnosis, June 28th, 2017, I had coils put in on the neurosurgeons recommendation. My recovery went very well. I had headaches for the first month and I just took it easy.

Every fear you mentioned, I had. I also have a strong faith. I asked God to please help me, and I left it up to him. Every time a scary thought came up, I asked him again. I did find myself being super nice to every person I came in contact with, just in case it was my “last time”.

My doctor didnt mention clipping, Im not sure why. Part of me wishes it was just clipped off and gone. I go back for another MRI soon, and I am worried.

You are very lucky and blessed to have found your aneurysm in time. Its ok to cry, it actually made me feel better when I finally did. Please trust in the doctors, and let your family help you with whatever you need.

Try not to get too far ahead of yourself with all the questions and ifs.Just take it day by day and enjoy that baby.
Sending prayers your way,
Michelle

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#5

Hi there again Olivia,
You sure are too scared, you think fast also like me before my Annie visited me.ruptured aneurysm is mine, tell you the truth my Annie just show up right after giving birth to my son. but you are lucky enough to see it right away, by the Dr. and to give you a precise cure for it! that’s one thing that you have to thank for though.
all you need to do is to set everything up before your surgery.
Because it was detected early for sure everything will come up as good as it goes too.
And to die is too far from your situation many of us here are really fighting to survive and still at the bed of Annie, Your’s is not to much to worry about. i know how you feel and where you are coming from. been there and i’m 100% you’ll get back to normal.
The Nuero that checked on you is really good, i don’t know who that is but to solve your Annie with clipped type means to permanently stop your Annie.Second to thank for.
And stop worring, like what i am telling to most of you who are in the battle. Just lift your self up to God and he will show you the way. I survive this, you will win this too for sure.
Stay Beautiful, don’t cry i’ll just give you heartache which might suffer from heart attact. that’s another issue to talk about. please don’tetimes think much, over thinking just gives you stress and everything that goes with it. Calm down set your mind free, sometimes listening to music will relax you also. Heres a tip try to close your eye’s and just listen to the soft music that you have,close your eye’s and just breath in and out. for a minute for sure it calm you up.
We are here alway’s we care.
LOVE LOT’S
Maes

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#6

thank you all so so so so much!!! you are all so strong and your words really helped me. it makes me feel understood and heard… i have a suspicon that mine came in 2012 and i think that giving birth and the crazy steffull years that followed made it grow so much. well thats my theory anyway…
what i read in your answers is that many of your aneurysms burst and how good it is that it was discovered “early”… but my doctor said that i probably have it 5 or more years alraedy… and i read that many smaller aneurysms burst… i really hope it wont before i get to clip it.
since a few days before i was diagnosed im constantly crazy dizzy but now that i know what i have, it really scares me. i am also exhausted and ive never slept and rested more since i my aneurysm was decovered two weeks ago.

i basically spend every minute since thursday in bed, binge watching tv series and crying, eating cake and chocolate bars and giving up on everything. but then, after reading a lot here and your responses and my husband also making me aware that i need to have something to look forward to i got up and rode my bike with my husband to his work for 1,5h through berlin and then i went to my sewing class and called my exboss to tell him that i would like to guide some tours until my surgery… i dont know if thats just a little light or if im on the right path but for today i feel a little bit lighter since my diagnose…

SO THANK YOU ALL so much!
i m thinking of all of you too … olivia

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#7

Hi Olivia :hugs:,
Yes, this whole experience is very scary. I am 34 and just had an aneurysm rupture on Sept 11 of last year and was rushed into brain surgery where they coiled it. Due to the violent rupture and the amount of blood on the brain I had a stoke while waiting in the ER. I also have a 2yr old son. My neuro-interventionalist (who happened to be on call at the hospital that day) told my husband that there was a 50% chance I wouldn’t make it off the operating table. Then if i did survive the surgery, there was a 75% chance I would die from a stroke or ceasure the next 3 days after surgery. Then there was only a 2% chance that I would be able to walk, talk and be somewhat normal.
Yet here I am :smile::smile::heart_eyes:
You are very lucky they caught your Annie before it ruptured, after your surgery you will probably get some head aches and be pretty tired. It will be as challenge with a 3 yr old but you can do it!!!
Having all the thoughts about death and dying is very normal too, even though it doesn’t feel normal. Sometimes I’m so afraid of dying that I’m actually afraid to live my life normally. I had anxiety before the rupture and it has gotten alot worse in some regards. I am working with a phyciatrist to help me work through this.
Having a strong support system is very helpful and comforting.
If you ever want to talk about anything, you can definately message me, I have a young one too and really understand the struggle sometimes.
So glad you reached out!
Love,
Gr8ful4life

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#8

Hello! so i got my aneurysm coiled last week!!! they had to add 2 stents, my aneurysm was already 12mm big and the surgery took a little longer as anticipated but went well… i stayed at the hospital for 5 days and am now back home. its been a crazy journey… i wanted to thank you all so very very much for the support and help and kind words, im still overwhelmed by the love, fear, support and this journey! it’ll take some time to get used to this i guess. 6 weeks ago i (thought i) was healthy and now im post op at home with a headache, taking blood thinners and wondering what that was… it happened so fast but im so glad i did it and got treated. honestly i m still quite confused. is that it now? am i healed?? i have a checkup in 1 year, an angiogram. and until then i have to take ASS and for the next 3 months another extra anti platelet medicine… im worried about having a stroke and i m quite confused about my health right now. can i just go on now? do every sport? is all the danger over? i wish you all a wonderful weekend and thank you so much again! olivia

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#9

Hey there Olivia, hope you feel better now and continuously recovering from your Annie. Just take some time now for your body to heal and not to stress yourself out thinking troubles again okay.
Take it slow, sometimes over usage of everything might give us malfuntions too you know. eat healty diets now, Milk helps our brain cells develop fast.
Pray and thank God for this okay.

LOVE LOTS
Maes

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#10

What wonderful news you bring, Olivia! Thank you for sharing your story. Your subject line is about being newly diagnosed and scared, and by the end of the thread, you have had your treatment, and are feeling so much better.

Now you’re thinking and asking about the future. What could be better? Because your subject line is about being diagnosed, I suggest that you start a new thread now and pose your questions about healing and what the future may hold. I know that there are great “local experts” here to answer those questions!

All the best to you

Seenie from Moderator Support

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