Hello, despite the seriousness of my condition when my aneurysm ruptured I’ve apparently made a very good and unexpected recovery. Ive been told there was a big probability I wouldn’t live and if I did I’d have severe disabilities. To look at me you wouldn’t know what I’ve been through ie frontal lobe hemorrhagic bleed, craniotomy to clip aneurysm , 2 months in ICU in an induced coma that I wouldn’t wake from until I had a vp shunt implanted. After only another 2 months in rehab I’d improved enough to go home. My surgeon calls me a ‘Miracle’ whatever that means. Now 2.5 years on I’m living with ongoing mental health problems that I’ve been hospitalised for and live with frequent headaches and worsening memory problems. No one can see these hidden symptoms and everyone treats me as though I’m back to my old self expecting me to carry on as normal. Once again I have no emotional support while resuming the roles of caring for my disabled adult children which I’m in no doubt caused the stress that caused the BP spikes that lead to my ruptured aneurysm.
I have another Annie lurking there that’s been observed for a repeat of no.1.and told to reduce my stress to control my BP. Ha!!!
I know I should be grateful to have gotten through so well but there are days I wish I’d just stayed asleep and blissfully unaware.
Sorry for what looks like a vent but I keep so much to myself it seems to burst out of me when I talk about my experiences.
Hi Lele
Im so sorry to hear about your experience but so pleased that you are still alive. I also went through a lot of trauma when my annie ruptured 22 years ago. I died three times and was told, the same as you, that there was almost no chance of me surviving and if I did, I would be a vegetable. I was back at work in three months. I gained front page news in the National newspaper as the ‘West Australian Miracle Lady’. Like you I am experiencing several after affects of the rupture. My memory is terrible and I had horrendous anxiety attacks for a couple of years afterwards. I still suffer from anxiety and chronic tiredness but dont seem to have panic attacks anymore However, I am no longer outgoing, I shy away from parties and gatherings. I no longer have a glass of wine and generally live my life with a cloud hanging over my head. Over the years things have improved a lot but I still panic when I have to leave my comfort zone. This is hard as my family lives in the UK and I havent seen them in 16 years because I cant tear myself away from my home. My son was 12 years old when I had my rupture (I didnt even know I had an aneurysm) and I prayed to God that I could live to see him grow into a man. God granted my wish and my son is now 34 but he remembers clearly the day my life and his changed.
I really feel for you with the responsibilities that you have with your children. I know that some days you just don’t want to go on - its all too hard but believe me things usually improved mentally and physically as the years go on.
Hang in there and may God bless you and your family. Remember we are all here for you.
Doctors seem to like to call us “miracles” when we survive a bad SAH. Mine calls me her “miracles of miracles”
. They told my friends and family that were at the hospital during my initial procedure not to expect much of anything if I even woke up. I surprised them when I did wake up and not only could talk but knew who BH was and the promise we made to each other a couple of decades prior - we are going to dance in the streets when we’re 80. I think all of us are told to reduce stress. Interestingly they never tell us how. Breathing is a very good way to reduce it, relaxation breathing is a must in my book.
It’s perfectly ok to vent, never apologize for that. After all, it’s why we are here. Hang in there and keep talking to us. Wait for Merl’s response from @ModSupport. He’s had a lot of craniotomies, I’ve only had endovascular procedures. If you can get Adult Service to provide you with some respite for your children occasionally that might be helpful.
Hey Lele,
My name is Merl, I’m a member of the Modsupport Team here on Ben’s Friends.
I don’t have an annie, but I’ve needed multiple neurosurgeries to manage a ‘growth’ in my brain.
I’m in Adelaide and post craniotomy and shunt insertion I too fell into that hole.
I had a plan:
Operate. Fix. Return to work. Only that wasn’t how it all went. My initial surgery was to ‘fix’ it, only it didn’t, then 3 months later they inserted the shunt. This was going to be the ‘wonder treatment’. I was told I’d have no more headaches 
Well, that was wrong. Over the years I’ve required 6 neurosurgeries, with each one hitting me harder and harder. My last major neurosurgery was in 2013 and I’m still trying to manage the up’s and down’s from that episode. I haven’t been able to return to my former profession since and my mental health took a battering.
I think the medicos using terms such as ‘miracle’ is often to try and lessen the impact somewhat. Not that it does, but that’s the intent. Similar to people making comments like “Well, it could be worse…” WELL, NO IT COULDN’T They may call it a miracle, but it doesn’t feel miraculous to us. I felt ‘weird’, almost like a foreigner in my own body. No one can see (and often no one can understand) those ‘Hidden symptoms’. I would report my symptoms to Dr’s and they’d look at me as if I was partaking in hallucinogens with comments like “Well, that just can’t be happening…” but it was. They’d try to minimise it all “Ohh, it can’t be THAT bad…” They have no clue just how bad ‘BAD’ can be.
I can be fairly stubborn. I wasn’t going to let this thing beat me, so I had to learn to manage around me. That ‘learning to manage around me’ has taken years and I still haven’t perfected it. Some days I can manage quite well, some days it all manages me and no 2 days are ever the same, so I’ve got to be super flexible. When my body says “STOP” I’ve got to listen, or I’ll pay the consequences (usually in agony) with a headache from hell.
Something you mentioned above in regard to having no emotional supports. In my former life I worked in disability support here in Adelaide, and locating and accessing services was a big part of my role. Being that you are here in Oz, I have some idea of the services that maybe available to you. You have a disability and a child with a disability, that can open up many differing options in regard to services. If you’d like to elaborate a little more as to what could assist you, I may (no promises 
) be able to give you some direction on how to access and utilise what’s available. There are services out there to assist, if you know where to look. I know some of the places where those services hide
Merl from the Modsupport Team
Hi Lele - and welcome to the group!
Like you, I am pretty darn new here, so I don’t have the depth of knowledge and experience that @ Moltroub, @skippy and @ModSupport do. Translation: their wisdom matters far more than mine! 
However, I am so glad that you decided to reach out and voice what you have been going through. It is important that you be able to speak to all you have been through, and you have found a caring and supportive community that can better understand what you experienced compared to neurosurgeons* and the rest of our medical teams and family & friends. (Don’t mistake me; I 
my neurosurgeon as he saved my life repeatedly! But, his expertise is in neurosurgery, and not the workings of my brain and my entire self of a being. VP shunts and saving my life - boy - he has my ever lasting debt for them though!)
Although I trust them (@Moltroub,@ModSupport, @skippy) more than myself on this board, I thought perhaps if I shared my experience, it might help to compare notes, since we are more contemporaneous in time. 
My annie ruptured in June 2023, and I have been working through the complications resulting from it since then (namely, hydrocephalus & meningitis which meant a bonus of 3 additional brain surgeries since the original rupture. And, no, the hair has not grown back just yet! ). Obviously, you had a far more serious condition since you were 2 months in an induced coma - I was only there a couple of days, so I appreciate that you have been battling a great deal more!!
I do not want to make this post about me - it is about YOU - and giving you the place to voice what you feel! However, I get the “maybe I should have just slept through it” feeling. To keep it short, right after I was starting to get through this latest round of recovery, one of my family members was diagnosed with a metastatic cancer, and I had similar feelings to you. For all the loss that I have been through over the past year (self, job, etc.), seriously, this is now added to my plate as well?!? Of course, it would have been easier if I was gone and didn’t have to deal with it.
But, that is not my hand of cards to play. So, instead, I try to look at the situation as a gift. I am blessed to be able to have time with my family member (years!), instead of what I tried to accomplish last year - a quick exit. We have time to say how we feel about one another, live memories and create new ones. Also, although very different diseases - I am able to share what I experienced over the past year and help in that fashion. Eg,. not a fan of Boost & Ensure, so Carnation Chocolate Breakfast Shakes are the way to go for protein/weight gain for me. - and now my family members are enjoying them too! 
Although I have been doing pretty well at recovery, I just visited my new neurologist this week who explained that patients can need 1.5 years of speech/cognitive therapy - and that is just for the average case - not for people like you and I that have had further complications. Perhaps that might be an option for you, if you are not currently going through that to help with memory issues? But yet, I appreciate your schedule is VERY full already with your children, and that would complicate life even further for you. I defer to Merl for what might be available - if indeed your doctors think it could help.
Not to get all sports (congrats on doing so well, Australia, in the Olympics so far! 
), but someone I admired as I was growing up was Arthur Ashe. I heard this quote way back when, and it is something I remembered - and leaned into a lot this past year. I share it in case you find it of any value at all.
If I were to say ‘God, why me?’ about the bad things, then I should have said ‘God, why me?’ about the good things that happened in my life.”
I am so grateful that you choose to vent and share all you are going through. You are a strong and fierce individual to have made it thus far, and I am so glad to have learned your story.
Please continue to do share/vent. We will happily be here for you!!
Hi FinWhaleFan. Im sorry for what you went through but pleased that you survived. Yes, the aftermath is no picnic. I am certainly no expert - I just related my story mainly to show that life goes on even 22 years later. Each of us has to go through our own individual journey and most of our journeys are different which is why its important to see how each of us have been affected. My son is still on medication for PTSD after witnessing me drop dead in front of him at 12 years old. One thing we all have in common is that a ruptured aneurysm doesn’t just affect us it affects our whole families and friends and it does change our lives forever.
May God bless you and be with you while you recover.
Please don’t look at me as any type of expert, I may, make that probably will forget what I said today, tomorrow. . I was thinking of saying we are all in the same canoe paddling in the same direction. Then I was thinking, no call it a boat. I then realized there’s so many of us with something to offer each other, we’re on a ship!
Hey Fin,
Ohh, no way, there’s very little wisdom here from me, I can assure you. Mine’s more my experiences, than wisdom . Many of my posts are along the lines of “don’t do this…” Why? Because I did that and here’s the result…" If there was a right way and a wrong way to recover, I did 80% of it wrong. We have all been on our own journeys and I am yet to hear of 2 exact same routes through it all. There may be some points of your story that click, there may be some points of mine that click. It’s only by others sharing that people can see/hear some of those differing outcomes. If they only heard my story, it would all be a very one sided story. We need your story too, to show a fuller story.
Merl from the Modsupport Team
I’ve said this before here, & I’ll say it again: The brilliant neurosurgeons who save our lives consider their work done once whatever brain procedure they’re performing is complete. The experiences we have in the aftermath–physical, emotional, etc., (unless they involve an additional procedure from the neurosurgeon) --don’t interest them. It’s really up to us to figure out what we need, to find places like this one, to find a good therapist, to try and articulate to our family what we’re going through (when we look perfectly fine but aren’t), etc. And in so many ways I find that fact unconscionable. Why are we left to our own devices, when we are so lost and vulnerable after our surgeries?
I continue to be amazed at the disconnect between the medical community of surgeons who invade our brain–and it IS an invasion, however it’s done–and the mental/therapeutic community that we (hopefully, eventually) stumble/fumble/bumble our way to. There should be some linkage there, some acknowledgement by our “brilliant” doctors who are tweaking our brains, that we will be…different on the other side. Because, inevitably, we are ALL changed by our experiences. And we are all changed in our own unique way. I just can’t fathom why there isn’t more immediate support, once we’re done with the medical piece, for our emotional well-being. No one needs to tell us what to do, but some direction/suggestion would be nice.
For all of you new to the experience, I’ll be honest and say your road ahead won’t be easy if you don’t take care of yourself–your whole self. Honor your feelings, every day. If you’re feeling down or depressed, seek help, talk to someone, come to this board and vent–the people here understand and are so incredibly supportive. You have true friends here. If you need deeper help, seek out therapy sooner than I did. I worked in mental health and thought I didn’t need to talk to someone, but there is a sort of grieving process that we need to go through with brain procedures, all of which ARE traumatic brain injuries of one sort or another. I did not understand that concept.
And so, you must grieve who you were before, and who you are now. I’ve had two aneurysms coiled and have two inoperable aneurysms. Each time my neurosurgeon went inside to coil, my personality changed, just slightly. I became less easy to agitate the first time; I completely lost any filter I once had the second. I had to learn how to be with myself, and how to take myself out in public again so I didn’t completely alienate everyone (AND my mother). So, while all these changes may seem subtle, and may even in some way be viewed as gifts, you are still not the you you were before. And that is so hard for anyone who hasn’t gone through it to understand.
Love, peace, and healthy healing to all my friends here in this place.
Kelly
That is so true on the disconnect with aftercare. We are still trying to navigate who can help with the issues my wife is living with 2 1/2 years later. There have been so many doctors appointments that were a waste of time. So many blank expressions from them. It makes me cry.
I am so sorry that you are experiencing this too! When my husband was discharged from rehab back on May 27, 2022, we weren’t given a single resource guide or person to turn to for support… He wasn’t assigned a Neurologist for follow up care, a therapist list or Psychiatrist to manage his meds or resources for support groups let alone anything for spouses! Finally, years latter, he has a neurologist, neuropsychologist, psychiatrist and therapist (who he doesn’t use) and a social worker. Not one Dr. from the very beginning. No follow through, just new Drs who give all sorts of different recommendations. As his wife,I have witnessed every detail however nobody listens to me because I am not a professional. Well, I am…I am a professional of sortd of him.
From what I learned and hopefully this will help others, it’s up to our PCP to connect us to any services we should need after we get home. Mine failed miserably, so I eventually got a new PCP. I didn’t realize it before I ruptured, didn’t know the word for his behaviors after I ruptured, now I do. It’s called gaslighting.
The reason for me not getting help was because my Neurosurgeon didn’t know what was available for me in the county I lived in. Understandably so, since she works in a county a bit over 60 miles from us, with several counties between. She knew who to refer patients to if they resided in the same county as the big teaching hospital. She even tried to set me up with a service in Winston Salem but it wasn’t a good fit for me and I’m unsure I could have tolerated being on a short bus for at least two hours every day plus dealing with the services.
Like Merl, I had been in the helping services. I knew what I needed, I just had to ask my Neurosurgeon to write the order. After I got in with my current PCP, no more gaslighting, no more insane suggestions like I needed a new Neurosurgeon. She does what she feels is best for me, if she doesn’t know, she refers me to a specialist. There’s been a time or two that she felt certain I had x, but sent me to a specialist anyways. Sometimes she’s correct, a few she missed the mark. I did have a recent visit and she allowed me to speak my mind about her colleague who I think should have ordered the X-ray or MRI back in March. That I would never return to the Orthopedic surgeon he eventually sent me to either. She listens to when patients explain the behaviors of other doctors.
Hello Lele, my name is Kirsten. I had a ruptured carotid artery. Ta-da. I made it too! Sorry I have to add humor or I get super anxious talking about it. Still in shock some days. I cry but that’s part of my healing. It helps to let it out. Like now I shake. But all that let’s me know I’m alive and I take it as little remainders something off with me. Self care is only way I make it. Anyways. I have two stents. One I feel in my throat and another in my clavicle all on the right side. I am so thankful for being alive. My twin boys take care of me with help of a state agency. My son Jonas get paid through the state agency to live in home to help me stay independent. It not a lot of money but it’s enough for twins to provide with my money a sustainable home. My point is the 2 hours a day he gets paid to do my hard stuff. So I have time for self care. Maybe you can find some help for piece of mind. Or just keep venting on here until your plan comes together. They are so many different suggestions here. I have learn once I try something I keep repeat the same over and over if it good for me. And finally my brain is trained automatically. Yes it is tedious but I apply it to family issues financially and wow!look at me!! I can now walk in a room and still remember! yeah, why I’m in it. It’s a long haul. I’m proud of myself every day. These long days and longer night are fun some days. That some day is less and less irritating. My day will flow good. I know stop and smell the roses has changed for me to stop sit on the floor, breath. Laugh with adult children enjoy living that’s why I’m alive . BA has helped me understand I’m different and that’s okay.
Hi Lele, our experience with the ruptured annie and a non support system are similar. I really would like to talk to you either in person or on the phone. I usually don’t reply to any one on the site. However, I felt like we have such a similar experience, I had to reply.
I know that you are not complaining, but glad to have survived. I have had that same feeling of wishing that I had stayed asleep too., But thankful that I didn’t stay asleep. This is my 19th year of survival. Believe it or not, it does get better, Lele. My way of coping is to pray. I don’t know what your beliefs are and I am not ashamed of mine. Anyway, I wish you the very best and will put you on my prayer list. I sure hope that one day; we can actually talk. My name is Donna.
God bless you! Vent, talk & discuss all that you need to! We are ALL here to help, listen and support you!
With love,
Jessica
Thank yoy for your post. Reading that and the replies have led me to understand that I’m not alone. I had my annies inmay 2013 and recovered well. 3 coiled and 1 left. I must stress that I do not worry about having another one however I am no longer me. The outgoing social butterfly that I once was although for a long time I tried to keep up this attitude. The first thing I noticed was that my taste in food had changed - no big deal but my energy levels have never returned to my normal. A good friend told me that I’d lost my sparkle and zest for life. I still have my sense of humour but have no interest in pursuing my passtimes that I used to love. I suffer from low iron levels (only since my annies and often wonder if this could be connected) and require iron infusions every few months. Depression is what I hate the most. I try to fight it and am on meds for this. I know I’m lucky and remind myself of this regularly. My life has been good and I wouldn’t change a thing (well perhaps the annies) so I don’t sit about feeling sorry for myself but I do so miss the old me. Sorry to be a downer.
And this was a big reason for me initially joining. Just in having others who understood, from their own experiences. I cannot tell you how many ‘Me Too’ moments I’ve had via the posts on this network. Life has changed, that’s undeniable. I’ve tried to return to ‘normal’, but I’ve had to settle for a ‘New normal’.
I do not think you need to be apologising for being ‘a downer’, not at all. I think for some of us our whole lives have been turned upside down and that’s the reality of it all. Me? I want the old me back. The reality is that that version of me is long gone, but I do still miss it and the life I had. Initially, I was referring to ‘Before/After’ but I found this reinforced the sense of loss and I needed to shift away from that mindset to be able to move forward. And please do not be thinking that I’ve got it all sorted out either. Some days I’m on top and some days it crushes me, just so long as I don’t stay down there for too long. For me, staying down there depresses me further. Not good. I know it, so I avoid it.
Merl from the Modsupport Team
@Doreen and @ModSupport -
FWIW, I completely agree, Merl, that Doreen does not need to apologize about her feelings.
Our feelings are what they are, and that is what makes this platform so important - that we have the space and the audience to voice them to a crowd who understands, and has been in similar circumstances. Processing our emotions and feelings is part of the healing process, and there is no value to keeping them trapped inside IMHO (note, not a professional). So, Doreen, keep telling us how you are feeling, please!! You are absolutely NOT alone!!
Lele, Please know the amount of respect and admiration I have for you! Sounds like you have been through a war and come out the other side in to a bright and beautiful new world. Please learn to put a period. Start a new chapter! Learn you, are a hero! People depend on you! You inspire us who have yet to accomplish and survived as you have! Please know you inspire me! I am so proud to know your out their! …and so grateful! Best wishes for a healthy future! Goldmountain
Hi Skippy,
Sorry for the late reply.
I related to a lot of what you said, especially living within your comfort zone. I’m learning to live with this new me and accepting my limitations. It’s really difficult when I remember what I used to be able to do. I wish others could see that I’m no longer the person they depended on and stop putting expectations on me that I can’t live up to any more.
I’m also better off living a quiet life at home doing my own thing. Anything outside of that sends me into a downward spiral. I’m constantly being told, for the sake of my mental health, I should get out more and socialise, but it’s the socialising that damages me, reminding me of what I’ve lost.
It’s helpful hearing from others in similar situations who understand these things. I guess unless you walk in these shoes you have no concept of what it’s like to live with a new identity.
All the best to you.