Brain Aneurysm Support Community

Too Scared

#1

Im new to this site, My aneurysm ruptured, emergency craniotomy, coma, rehab, second crani for second aneurysm not ruptured and an AVM. Now im different, not sure I should be here anymore, feel like a burden to everyone. Most say Im a ‘miracle’ but they dont live my life. Not sure they should have saved me that day. Not sure about next steps. Too many deficits to name them all, most of all, Im not happy with anything anymore. Now what do I do? Anyone out there?

thanks for listening.

#2

I’m sure a lot of people will be able to relate to what you are telling us, Tigsmum. You say that you are “different”, but what I see from here is a person who is expressing herself well, and thoughtfully.

What changes are the most significant for you? Are you hoping that other members will be able to reassure you that this will pass, or are you maybe hoping that someone can tell you how they overcame what you are experiencing now?

We’re happy to listen, but is there anything else that we can do for you?

Seenie from ModSupport

#3

I remember the trauma, and how hard it’s to recover. In time you will recover. You may feel that. You are different but you can work with this. It has been almost 4 years since I had encephalitis and I knew nothing for 10 days. My family was so happy that I was home but I had to learn everything over again. How useless I felt. They found two brain aneurysms they called mirrors they seemed to be looking at each other. One 4mm and 1 7mm. In sept of 2014 they coiled them both. I had checkups every year this year they found the left one had started to fill up again so in March they clipped it. Each procedure they do on my brain, makes me different. I am glad I’m alive. I am 68 years old and a lot to live for and so do you to watch children grow up,Sorry for the wondering hope this helps just talking has helped me. God bless you. You will get through this

2 Likes
#4

Hi,
I’m Maes I had same thing then,THE CANT DO ALONE THING!
maybe you’re the type of would like to try new things but…
I really gone through this stuff ater my surgery,I even can’t chew my foods that I eating it then,
You know What I would suggest if you are troubled by some things that we can’t resolve it. Best is to try seek God.first try to visit a church talking to him in silence and reflect all that you have encountered.
you can feel the deffirence after this.
Hope We make some answer…
WE CARE MAES

3 Likes
#5

Maes,
Thank you for your kind email. I am a very faithful person and attend mass weekly. I pray more for my family, that they can grow to understand and accept my new reality. I don’t pray much for me. Perhaps I should. I am sad all of the time, rarely laugh anymore, and sometimes wonder why God saved me. I will continue my prayer and devotions and look for some understanding of how to move on. Thank you again for your kind words. Tell me more about what happened to you if you feel you want to. I would like to get to know you better. Where are you from?

Hope to read more from you,

Sherie

#6

Thank you lasagna,

There are days I am glad to be here and other days when "I know that I am not normal and that people can tell that I am no longer normal” that is very difficult. I was a high functioning healthcare director in a busy trauma center with so much responsibility. I was able to problem solve and multitask. Now I struggle to get dinner in the oven and everything done at the same time. UGH!! The balance and vertigo, depth perception, nause coordination etc. is such a problem, I have already fallen and broke my arm, dropped and broke too many things to recall, some very important to me. Is this the best that I will ever be?
Im just so frustrated and angry. I worry that this is as good as its going to get. I am at 2.5 years since my rupture and resulting brain surgeries. I have tried to resist the self pity, and have not said those 2 pity words (why me?) yet. I know that I am blessed to be alive and that I am one of the very very lucky 1% ers.

I think I joined this group just to find a friend that understands what this is like, and someone I can trust to not judge me by my disabilities. Thank you for reaching out.

#7

Thank you for reaching out. I am not sure of the rules on this site, they say to not post too many responses, so I want to be mindful of those parameters. Because my aneurysms and AVM were all located in my cerebellum I have balance, vision, vertigo, depth perception, etc. as deficits. I am an RN of many many years who has worked in the operating room as a nurse and leader. Perhaps this is why I am struggling with the “recovery” process. Frankly this is horrible. If there is anything someone has found to help the vertigo, I am open to suggestions. I have yet to find a neuroopthalmologist in the midwest, nor a neurologist who has the expertise to help me. I wont go on and on, because there is always someone else worse than I am and I by no means want to minimize anyone else’s issues. I think sometimes I just need to talk to someone who ‘gets it’

thank you
tigsmum

1 Like
#8

Hello there,
Honestly I haven’t had the time to visit the chruch then 5 years
ago…reason for this is NO ONE EVEN MY FAMILY wants to go with me because
I was a disaster as I have a disease…What would you expect from a stoke
person. Terrible right! I even got bad words from some folks then, But I
have to face the fact that This is just a challenge again given by God who
else. My husband had left to earn money to pay all the debts from the
hospital and from some parents,friends too, after 6 years of being I learn
how to survive on my own and figth for my burdens because I have to feed my
child she was only 3yrs old then, I even beg for a job and since I was able
to tutor a 1 child then that gave me an oppurtunity to gain more of
tutoring from 1 to 6 until I had suffecient funds to give my daughter a 3
meal with some snaks too this was my reward and every after being paid I
treat her out at the park with my helper then.
But at the end of the day I cry because I was really lost,The only thing
that motivates me is the child that expect my work and she’s the only
person that I can truely depend on and can tell everything that’s on my
mind until now! she’s turning 15 now this January.
Maybe giving some of my struggles can might give you a light though I’m
From Asia (Philippines).
It’s just now I do visiting the church and pray for all,Yes like you I
don’t pray for my self but for all who needs a prayer.
Sorry I think I had long mgs. Thank You for sharing in your feelings.
MAES

#9

Tigsmum, you can safely ignore those automated warnings about too many posts. You just post as much as you need to. The only rules that we’re kind of sticky about are these, but I have a feeling that you’re the kind of person who wouldn’t dream of doing those things anyway. :wink:

Yes, it sounds like you have a lot to deal with, and then to have gone from an RN leader to a patient: that’s a really difficult transition, isn’t it?

I hear you about not wanting to go on and on, but the fact that there are always people worse of than you isn’t a reason to minimize your own issues. We’re here to listen, and the great thing is that we get it, all of it. (That said, I’m not a BA patient, I work all over Ben’s Friends helping moderators and troubleshooting. I just pop in here and there to chat. I can’t relate to a BA like others here, but I do have a rare disease.)

We’re glad that you found us, and even happier that you are settling in and making yourself at home here.

Seenie

#10

Handy hint time! Click on Maes’ avatar, and you will see her public profile. That’s why we ask all those pesky questions when people ask to join.

OK, there are other reasons we ask as well: we want to be reasonably sure that members have first-hand knowledge of the condition, and that they are who they say they are. We work very hard to keep out spammers, scammers and trolls.

Seenie

#11

Hello Tigsmum, I am very touched by you we’re in the same battle, Yes it’s a battle that no one know’s when it will end. The fact that we are on the peak of our career when our ANNIE visit’s us. But to survive is “Yes” Miracle for our love one.Though not spoken out but we can feel that they love us. Sometime`s it is sad, the things we can do then for our children, partner whatever you may call it still we can’t do it now.
I was a Lead CS for a known company here and after 13 yrs I can Truely tell that God has it’s plan I’m working now as a freelancer doing my own business though it.s small but suffient to make have my children attend their schooling.
Maybe one of these Day’s I might write my life story here on our site just to give in an Inspiration to all.
LOVE LOT’S ALWAYS HERE.
MAES

1 Like
#12

So im very new to this group. well to any group on here, i found out anout brain aneurysm support online by fluke. I was just googling some supports cause i was feeling lost and alone… this i my story:
I am 37 and was 36 when i had a frontal left brain aneurysm burst on new years eve of 2016/2017 … i guess i was in extreme pain i was puking (i dont remember anything from a week before i went in to 2 weeks after my surgery) i guess i was put in a induced coma for a week or so… they coiled my bleed and went through my leg/ pelvic area to get there. I guess i couldnt breath properly so i got traked ( unsure proper spelling) tube through my throat and had feeding tube threw my nose… when i finally came to with awareness i was tied to the bed both hands and feet , tube in nose and throat…let me tell u that was an experience all in its self …knowing last memory was a few day to newyears and biggest problem was deciding what to do for that night to celebrate to waking up in hospital tied to a bed eith tubes everywhere and not being able to speak… it was confusing , scary, sad, afraid, and i felt just lost… and everyone kept saying i was a miracle… and i didnt understand why they thought that. Until was told VERY scary procedure given a 30% chance of survival at time, told they thought i wouldnt walk, talk , eat or even a chance tovbreath on my own again. And if i did it would take months of rehab to do… be in UofA for at least 3 months and Glenrose rehabilitation for 6 months. but i was up and out of there and in my home at my parents in a month.
Here is a little back story about me. I have 3 wonderful children a 19 yr old boy , 15 yr girl , and a boy who just turned 5. Have had HBP sense i was 20. Heridetary. And had headaches and migraines my whole life. Live 1hr from the U OF A. Was diagnosed with end stage kidney failure a year before my anerysm. But was sick for a year before that. I went from 100% function to 12% function in 2yrs. So i was determined to find out why and fix it. So sense ive been out if hospital for anerysm ive had 4 operations … and my kidneys been at 11 % for a year… but never had time to really heal concentrate on my brain … the damage it had has been over sensory stimulation easily , crowds overwhelm me and my emotions are up and down quick to cry ect. …and never feel actually happy… i have another inoperable aneurysm so have to remain stress free… and found out had a minor stroke at some point before my aneurysm. My daughter has rebelled ever sense of my brain bleed and is becoming a rebellious teenager…and i find everyone just assumes im all better and treats me like nothing happened … like they forgot about it or i should be “normal” again by now. Anyone feel lost like i do?

#13

Yes. Were you at university of AZ? Or AK ? Only matters because I was director of surgery at U of A ( Arizona)

I am sorry you are going thru this, I completely understand how you feel. We are both lucky in a sense but I too feel misunderstood, as though I should be ‘over this’ already. I lost my Service dog a few weeks ago to a sarcoma and it has taken me into a scary place.

God speed my friend

Tigsmum.

#14

Hi Tigsmum,

I had a vertebral aneurym rupture harboring the PICA (VA-PICA) almost 4 years ago and suffered from similar issues (imbalance, vertigo, depth perception) as well as single sided hearing loss, tinnitus, double vision, oscillopsia. Like you, I went numerous physicians but I did not find answers to my problems. This artery supplies blood to the lateral medulla and the lower portion of the cerebellum but the root cause of all my problems is that I had a minor stroke in the brainstem. I can share you more details in a PM. The difficulty of today’s medicine is that each specialist stay in their own swim lanes. I had to find an “Uber” physician who look at all my issues and finally have a treatment that minimizes my issues. I think that we need to chat. Please take care of yourself. It is so hard for people to relate as we look fine on the outside but spinning in the inside.

1 Like
#15

Thank you lasagna,

There are days I am glad to be here and other days when "I know that I am not normal and that people can tell that I am no longer normal” that is very difficult. I was a high functioning healthcare director in a busy trauma center with so much responsibility. I was able to problem solve and multitask. Now I struggle to get dinner in the oven and everything done at the same time. UGH!! The balance and vertigo is such a problem, I have already fallen and broke my arm. Im just so frustrated and angry and worry that this is as good as its going to get. I am at 2.5 years since my rupture and resulting brain surgeries. I have tried to resist the self pity, and have not said those 2 pity words (why me?) yet. I know that I am blessed to be alive and that I am one of the very very lucky 1% ers.

i think I joined this group just to find a friend that understands what this is like, and someone I can trust to not judge me by my disabilities. Thank you for reaching out.

#16

WOW I can so relate to you. I had my rupture almost a year ago. Yes we are miracles! And even though we may not always feel like it…we are SO lucky to be alive! I’ve lost so much of my life but I have my life and I have to believe theres a damn good reason for having survived. I’m not sure what that is but I’m sure there is one.

#17

How are my friend? Where was your aneurysm and what is your life like now?

I sometimes need an ear do u?

S

#18

Hi there Sherie,hope your in the pink of health too, hope so. you know my story about what I call “the destroyer” lol. I can say. it changed my life forever but God was really good on me little by little until now I’m getting to know more about my self and enchancing the least that I thought I could not do.my Annie was a rude one I should say…I actually die for a second and back on this earth…many don’t believe me but it was my voyage through life…it’s quite a long story plus the journey on my rehabilitation too, it takes 1 year and now though I can’t run normal but still alive today which only means we are a God’s little children again funny. but that’s what I felt we are delicate and sometimes we seek for understanding towards other but we know our stature makes our love one suffer more than we do. but that’s life as my Friend say I’m her treasure because I can lead her to the path which she sometimes don’t understand of some painful things that I can answer it straightforward without harmful words. even my daughter confide me with her problems and just by telling somewords of wisdom coming from my experiences makes it easy for her to understand.

My life now after 13 years surviving Annie is just fine.
life can be rude or cruel or painful but we are the captain of this ship, we are the one who chooses the path to go or just stay without letting another chapter to begin again…

Hey…you can always chat with me here…
I can be friend from a “Annie”
LOVELOTS
Maes

2 Likes
#19

You should! You have been a wonderful friend and inspiration to many.

Seenie