Hello everyone. I found this site whilst scrolling through google as it seems that I can’t stop whilst in this current situation. My girlfriend didn’t reply to my message on Thursday night and on the Friday morning I had a message from her mum saying she had awful news and that my girlfriend had suffered from brain bleed which I later found out was caused by a ruptured AVM. She was kept in deep sleep during the night and was operated on during the day on Friday. They removed the blood clot and stopped the remaining bleeding, as far as I know that’s what they did but since I’m English and they’re Finnish there may well have been more to the surgery that her parents just weren’t able to explain (understandably). She was still kept in deep sleep on Friday night and a new scan was taken on Saturday morning, unfortunately the results were not what they wanted. I don’t know what was done but they were then told to wait for some more results which came through in just a couple of hours later and showed that the bleeding had stopped. On Saturday night her sedation was lightened to see how she reacted, and she moved both her arms and legs which I have been told is a good sign, the scan on Sunday morning showed that there was some predictable swelling on her brain so they decided to cut a small hole in her skull in order to give the brain space and to prevent any additional damage. Since then (yesterday) she has been kept asleep and the swelling has gone down a little. I really don’t know what’s the next in the process and due to our long distance (being in different countries) I have nobody to ask or to be there for me. I’m just sat here waiting for any updates that her mum will message me with. I was just hoping someone would be able to tell me what happens next as I have no clue. Do they just wait for the swelling to go down and then start to wake her up? It’s now been 3/4 days since she was taken to hospital and I don’t know how long it’s supposed to be until she will gradually be woken up? I just miss her so so much and I feel so alone, she is practically my only friend and for over a year now I haven’t ever not spoken to her for more than a few hours whilst I’ve been at work, every single chance I get I message her and tell her what I’m doing. It feels so weird to not have that right now and I really don’t know what to do with myself, days seem so long and I just want her to be okay and for us to get through this together. I was wondering if anybody on here could give me some insight on what to expect when she wakes up and how much longer it will probably take? I’m just so scared and I’ve never felt so awful before.
Joe
Joe,
Welcome to avmsurvivors! It’s great that you found us and I hope we can help you through some of your questions.
I managed to discover my AVM before it bled so I’ve not got direct experience of what she’s going through. I’ll offer what I believe and others will be able to confirm.
I think that sometimes, everything gets done in the one operation but sometimes further operations are needed. What I’d expect is that all that you describe is to do with dealing with the initial bleed. Whether they have been able to see all of where the bleed has come from or wholly removed the AVM is not clear and it is possible that they will let her recover from this then take more scans – perhaps in several weeks’time – and be able to see more clearly what’s going on.
If they follow that course, she may then need one of three different types of operation to resolve the AVM. Sometimes they do this by doing a “craniotomy”, which is effectively open surgery. Sometimes this is done via a catheter embolisation (feeding a very fine tube through her arteries to the offending area and literally blocking it up with glue; I had this approach) and sometimes it is done via radiotherapy: zapping the vessels from the outside with radiation to cause them to close up.
For the moment, she just needs to get better from the stroke and the doctors will determine whether further scans and work is needed to “make her safe”, you might say. It is very difficult to know how long it will take her to get better: it will depend on how much damage the bleed has done. That she is moving her fingers already is good.
Very best wishes,
Richard
We are just patents here, same as your girlfriend, not doctors, so we’re not qualified to say how long something might take, even if there was enough info to go on.
What I will say is that recovery from a brain injury is unlike anything else. You break an arm, it takes a fairly predictable six weeks or so for the bone to knit together enough for the supporting plaster to come off. Brain injury doesn’t work like that: it’s very unpredictable. If you have a good read round here you’ll find that one of the key things everyone says about recovery is that it is a real exercise in patience. Honestly, as a loved one, you’re going to need to have that patience as well. It’s important to continue to look after yourself – I know you’re wholly distracted by how she is – as it can be a very long recovery. The most important thing your Finnish family should know is that you’re still there, still concerned for how she is and not going to give up on her but you all need to remember to eat, drink, sleep, work and rest. It isn’t sustainable to be on vigil for how long this might take.
Very best wishes,
Richard
Honest answer from me… I don’t know how long it will take. I think it entirely depends on the damage done. She’s young and medics will tell you that recovery longer term from stuff like this is likely to be more complete for someone younger, so there’s everything to be positive about. But I don’t think there’s anything for it but how long it decides to take at this stage.
My assumption is that the blood goes all over your brain, it hurts like hell and it blocks off the circulation of your cerebrospinal fluid. I assume that with some time, the blood dissipates somewhat and this normal circulation of the CSF gets [mostly] back into its usual cycle. I assume that if her bleed has been significant, they are keeping her under sedation until a more normal cycle is established as otherwise she could be in trauma and more confused, thrash about etc and do more damage than good. So I assume that’s why some people stay under sedation for a while: we’re waiting for things to settle down post bleed.
It does sound good that they are moving on with further scans and it is excellent that she moved nicely when the sedation was reduced.
I don’t think you’re being annoying, selfish or rude in the slightest. These things are the most traumatic for all of us to go through and we all feel very much as you are just now. I’m only being calm about it because I’ve gone through my trauma / worry / etc. five years ago and come out the other side ok. When you’re going through it, it is a whole new experience and wholly traumatic. Obviously it is even more difficult with her parents struggling to tell you what’s going on and you being so far away.
Everything you’ve reported so far sounds good. It is just going to need the hospital to work through the scans etc and choose the right moment to reduce the sedation and see how she is. You could think of it at the moment as very much kinder to her that she’s not experiencing any pain or confusion or other effects of the stroke while she’s under sedation. She will worry about it when she comes to but she’s being spared that at the moment.
Read around. Learn what others have gone through and you’ll be able to support her parents in making decisions perhaps if you learn what the surgery options are, when people recommend surgery versus leaving it alone. You can do something positive to help them from so far away because you have the time and good English skills to absorb information from here.
I found reading about this stuff as I was waiting for my surgery a good thing to help me justify to myself what choices I needed to make and to encourage myself that the world wasn’t about to end.
Best wishes,
Richard
Hi Joe, Sorry to hear about your girlfriend’s bleed. I had a similar experience. A bleed and craniotomy, testing/didn’t get it all/ another craniotomy, more testing, long recovery (in my day it was more invasive, they opened up your skull), seizures ever since from scar tissue.
It sounds like she’ll (both of you) have a long ordeal. But hopefully she’ll get through it all and have a great quality of life again. There’s really no way of knowing how long it will take.
As far as your own emotional suffering, you might have to put it on the back burner if possible to help her not to panic.
Any time you feel like venting this is a great place to do it. Nearly everyone here’s been through similar ordeals. Be strong brother. Best wishes, Greg
Hi Joe, my thoughts are with you, your girlfriend and family. I had a bleed back in 2016, no idea I had an AVM before that. I was 48 at the time. Mine stopped, clots cleared and I ultimately had gamma knife. I can tell you from first hand experience, patience is our friend in recovery. Always remember that forward is forward! Recovery is a slow process, and that is where the patience is so important. I was frustrated, those around me were much more patient and supportive, it really helped me.
You’ll find a wide array of experiences here among our big “family”, don’t be shy to lean on us! Take Care, John
Hi Joe,
I’m so sorry to hear about what your girlfriend is going through, and you as well. It sounds like it’s really hard and scary to be physically distant from her right now. I can tell from your message you care deeply for her and want her to not feel discomfort and to be ok. My first piece of advice is to channel those feelings into strength for you and for her. The recovery is long as others have said and you will want to have some reserves to tap in to. You sound like you have a big heart, so I’m sure you can do this! Like others have also said, this is a great community to support you.
Less than two years ago I also had a brain AVM rupture and experienced a brain bleed (hemorrhagic stroke). I had an angiogram to further detect the AVM and plan my treatment. Then I had a craniotomy to have the clot removed and my surgeon also did an AVM resection to repair the vessel that ruptured. Unfortunately, there was some residual part of the AVM remaining after the surgery, and I had to return three months later for a second craniotomy. I had lots of difficulties for the first 6-8 weeks and then many things improved immensely. There are other challenges I still live with. Importantly, it sounds like your girlfriend has gotten through some of the hardest parts already. Other folks are right, we’re not doctors and we cannot give you answers to timeline questions etc. Every AVM situation is so different and when rupture occurs it’s even more specific and complicated.
What I can say to you is this - my situation was really serious. And the road is very long to recover. But I am here right now typing this message to you, telling you to be strong. That is indication that many people come through this and recover and live lives with their loved ones experiencing the joys of living. I am sending your girlfriend strength and wishes for healing and comfort. Let me know if I can answer any other questions. Hugs from an ocean away!
Hey Joe,
Welcome to Ben’s Friends.
You’ve been given some really good info by the other members and sorry, it’s true, nobody (not even the dr’s) can give you an exact outcome. They (The medicos) can give you a ‘Best case scenario’, but even then the variables in any scenario can be huge. Me personally, I’ve required a few neurosurgeries and none of the outcomes have been the same. And nor have the recoveries been the same. None of the recoveries have been easy, so patience is going to be needed and LOTS of it, from everyone involved. Some medicos often make it sound like neuro recovery is a simple straight line of progression. It is NOT. There will be good days, there will be bad days and there will be OMG days where that progression seems to go backwards. All of this is normal, still today, years after my last incident I still have those good/bad days.
Now, there can be a lot of stresses going on at this time and although, obviously you are concerned about your girlfriend, you must also make sure you look after you at this time. Sometimes when we’re concentrating on the wellbeing of others we sort of forget about our own needs. The problem being that if we burn ourselves out, we can’t be of any use to those we care about, so you must look after ‘YOU’.
There’s lots of good people here and if we can assist in anyway, please do not hesitate to ask. Admittedly, from behind the keyboard, there isn’t much we can do but we can listen and give you advice from our own experiences.
Merl from the Modsupport Team
Wishing all the very best for you and your girlfriend.
Lulu x
Welcome Joe
Bluntly you’re on a really rocky path now and possibly forever. However I hope both of you can work through the journey. It is possible now to have success and recover for a good quality of life.
AVM survivor numbers were very low 40 years ago.
I’m 25+years post rupture but I spent 6 months in hospital for full time treatment in 1990. It took a dedicated physio to make my hand grasp and eventually catch a ball. Some days now I can’t do it but I’m still here.
Because of your physical distance I hope you’re able to send voice messages via your gf mum. Sometimes voice is easier for the brain to process. Well that’s how it was for me.
Best of luck
Tim
Hi savanna! Thank you very much for your response. My girlfriend has woken up, a few days ago actually. Her parents have been able to go and see her every day since but she hasn’t spoken to them yet, she did answer the nurse but that was only once. I don’t really know what’s going on as I’m not there but as far as I can tell from the messages from her mum it’s like she’s a bit clueless. I can obviously understand that but I’m scared that this is permanent, she’s not really engaging in conversations and hasn’t asked about anything. She was given an iPad and started to scroll through Netflix but she hasn’t done anything other than that. Like I said I understand this may be normal but I’m not really sure, I was wondering if you could maybe give me an insight into what you know since you’ve been through roughly the same thing? I’m just slightly worried she won’t remember me and won’t remember how to be a normal person. I hope you are okay though! And thank you for replying!
Hi Joe, That’s great news that your girlfriend is awake and even scrolling on Netflix! Huge! I am so happy to hear that and will keep thinking of her and sending positive vibes her way. I know scrolling Netflix seems minor, but it shows so many milestones - motor skills, attention, sensory intake. I will say, from my experience after my bleed, that it took a few weeks for me to be able to have the TV on or text or look at a screen. I had many challenges with sensory overload and really preferred quiet, calm, no or low stimulus surroundings. Even today, almost two years later, really loud spaces with lots of conversation or even a movie theater are usually off the table for me. But over time I have had significant improvement; again, this is a slow recovery!
To address your girlfriend’s alertness: For me, I don’t have real clear memories from the time period right after my bleed and first surgery. So, I can’t totally speak to how I acted or seemed to others. My husband tells me I slept a ton, which I do remember spottily. I also remember how challenging it was to be in conversation with others. I had so little energy and it took time to work my stamina back up. I had a few different medicines to take at the time, including pain medicine and I would attribute some of my confusion to those as well. I wonder if your girlfriend just needs a little time to adjust to a new reality. I certainly did, and even (almost) 2 years later, I am constantly making small adjustments to my new “normal.” It sounds like you’re doing a great job supporting your girlfriend and I hope you’re taking good care of yourself, too. Caretakers like you need strength and space to provide support to loved ones!
Someone in another reply mentioned physical therapy and I want to let you know that utilizing that therapy as well as speech and occupational therapies were key to getting me back to daily tasks and just moving around. Highly recommend! As I’m sure you’re starting to see from all these replies, it really does just take time and patience to get on the road to recovery. It sounds like your girlfriend is making incremental progress and that is good news overall.
Hi savanna,
Thank you again for your reply, I am so confused right now your words mean so much to me. I honestly can’t imagine being in your or my girlfriends position I really feel for you guys is must/must’ve been so hard. Just thinking about her not knowing what’s going on and basically being clueless upsets me so much I just want her to know that I and everyone else that loves her is here for her. But I know that if I walked into that building she would have absolutely no idea who I am and it really really upsets me. Today she was transferred to a stroke unit in another hospital where she will stay until she is ready to start rehabilitation. I’m not sure if this is a good thing or not? To me it sounds like a good thing as it means she’s no longer in intensive care and is stable enough to be in what I like to think of as a hotel that will help her get better and remember things. I don’t know though, does it mean she has improved enough to go somewhere or is it the opposite? I just really hope she starts to improve, I know it hasn’t even been a week since she woke up but the patience is getting harder and harder and she hasn’t regained any memories at all yet, I just want to see her and talk to her because I miss her so much. She will have therapy whilst she is in the stroke unit of course, which I did expect to happen. I guess I just wasn’t ready for the weeks after her waking up where she doesn’t know anything, I’m uneducated on this topic and I just thought after a few days maybe she will begin to remember things
Hey Joe,
Recovery from neuro trauma can take time, a L.O.N.G. time. In very layman terms it can be like hitting a reset button. Those things we knew, may no longer be known. I completely understand that this is difficult for you but that ‘Reset’ can be 100x, 1000x harder for your girlfriend. I have been both the patient and family member of a couple of neuro patients and I found the family journey harder to cope with than my own. My own journey was both physically and psychologically exhausting. For me the emotional/coping side of my journey was less, everybody else around me was emotional. I was just trying to deal with ‘Me’ or the ‘New Me’, that was exhausting enough. I had to place the rest of my world on-hold just to be able to manage ‘Me’. My memory was a mess and took quite some time to return to normal. I found little triggers would remind me of things, which assisted in bring my memory back.
Being, as you say ‘uneducated on this topic’ is not a negative, in fact I would suggest most people, unless they’ve been affected, would be ‘uneducated on this topic’ too. I say this because I was educated on this topic, I worked in the field. I have family affected. But, what I knew was all of the theory, the reality of living it can be far more shocking. Initially, I had the expectation I would bounce back, just like before and when I couldn’t I got angry, not with others, with myself. It was the support of my then girlfriend (now wife), that got me through.
Nobody and I mean NOBODY goes into this knowing all about it. I’m often saying 'two individuals can have exactly the same bleed, in exactly the same place, but have vastly differing outcomes." Some can bounce back relatively unaffected, for others there can be impairments and then for others there can be lifelong issues. And there really is no exact measure. BUT one thing that certainly helped me was knowing I had/have that loving support. Be that support.
We don’t have all of the answers either, but we have experience, personal experience. So if you have questions, ask away. If we have the answers, we’ll let you know. And if we can be of any support, just ask. That’s what we’re here for, to support each other, because we all know just how hard this journey can be for everybody involved.
Merl from the Modsupport Team
I read your thread a while back, just didn’t have time to reply - I read through most posts, and agree with what has been posted
After my rupture I was in ICU during COViD, so I could not see anyone whatsoever - my wife managed to get in for about two minutes before I went in for my embolization.
But, thanks to today’s technology I had connectivity to the outside world. Between FaceTime, but mostly text due to me being so out of it.
Difficult situation for sure. . . Hope for the best, and try to reach out to her if she’s okay with it - anything AVM/Stroke, etc. related is quite life changing for most
Hi Merl,
Thank you so much for your reply, as I’ve said to others your words really do mean a lot right now. I honestly don’t really have a clue what’s going on and any information from personal experiences is helping me massively to know a little about what’s happening. I do completely understand that this must be so much harder for my girlfriend, I genuinely can’t even begin to think how hard this must be for her. I don’t know what’s going on in her head right now but I really don’t envy her situation I just feel absolutely awful for her. It does genuinely break my heart to think that she’s not herself right now, we all just want her back so much and the patience is so hard. It’s interesting you say it took you a while to get your memory back. I hope you don’t mind me asking but how long roughly did it take you? And what sort of things helped trigger you into remembering stuff?
I’m glad you were able to get to where you are now though! It must’ve been so hard and a big thanks to your wife for giving you the support. I want to support my girlfriend as much as I possible can but right now I don’t think she will even remember me haha
Thank you very much for your reply though, like I said any sort of insight really does help a lot.
Thanks Mike, must’ve been hard for you to not be able to see anyone in person though. COVID really does ruin everything huh 
But yes you have a good point, calls and FaceTime and all of that stuff is amazing for keeping us connected. I will of course be using it to talk to her once I am able to 
she is awake now however unable to talk to me, right now I don’t think she will recognise me lol so probably not the best idea to try and call her 
she will also need to go through speech therapy. I think it may be a long time before I’m able to speak to her again 
Thank you for your reply though, I shall keep you updated on the situation
No, I don’t mind at all. Like I say ‘If you have questions, then you ask’.
How long? It wasn’t like a flick of a switch and my memory returned, but more like ‘flashes’ of memories initially. Then those flashes started to link up. I had times of such clarity I could recite the chemical periodic table from my school days, decades ago, but then have times I was lucky to remember my own name. It was EXHAUSTING and I’ve put that in capitals because it was a level of exhaustion the likes of which I’d never experienced before. I’d (sarcastically) say to my wife “There’s nothing wrong with my memory!!!..But who are you again?..” and it was said as a joke ha ha, but the reality was that it was all a little too real and I was trying, unsuccessfully, to minimise her stresses. My recoveries have not been a straight line of progression, not at all. As I said previously "there will be good days, there will be bad days and there will be OMG days’ and sometimes those Good/Bad/OMG times can all happen in a single day. Is this ‘normal’? Well, it was for me. I’ve spoken to the medicos about it all and they often look at me strange and say things like ‘That shouldn’t be happening…’ but it is. I am yet to hear of 2 patients having exactly the same injury, having exactly the same symptoms or exactly the same outcome. There are simply too many variables.
What helped was seeing and talking with people and the life I knew. I think Mike’s comments in regard to utilising technology is a must. I found photos to be an excellent way for remembering faces and situations ie ‘Remember this, when we went to … and visited … and did this…’ having the picture and an explanation helped to reconnect. It also assisted to reaffirm thoughts I had but was questioning. For example, one early example I remembered a dog, but I couldn’t place where from. I was getting frustrated I couldn’t remember and the more I tried the more symptoms my frustration would trigger. Turns out it was my brother in law’s dog and when I saw a picture of him and the little mutt it all clicked into place. I remembered his house, his car, his job, his family etc all from that one picture, I just needed that trigger.
If your girlfriend has access to technology ie computer/ipad you could make up a slideshow with images and sounds and an explanation for each. Some photo software/programs are available for free online, with both voice and written narration. Personally, I’d recommend both as your own familiar, calming voice can help reassure an often-frantic mind. It may have the added bonus of giving you a task to occupy your mind too, to give you a break. I found when the only voice I heard was my own, going over the same questions and getting the same incessant answers, damn near drove me nuts. Having something to occupy the mind was a huge advantage.
Hope it helps
Merl from the Modsupport Team
I’d say do it anyway. You never know what trigger helps her to reassemble things. While she may recognise you on video, she may not, but equally it could be your voice that acts as a trigger to reassemble a bit of memory. Music seems to be a bit magic, too. I assume that there is a different part of the brain that processes music than speech, so sometimes that will be recognised differently.
Don’t give up. Just try different things.
Best wishes,
Richard
Yeah I of course will try it all, I just don’t think I am able to yet. SHES still not strong enough to fully start her rehabilitation and I doubt her parents really want me pressuring to call her. I will once the time is right and the patience is killing me, but I’m not sure how her parents would feel if I asked to FaceTime her haha. I was asked to send in pictures of me so hopefully that starts some sort of memory regain itself