What a great way to start off at seventeen

Insight- Since the age of 13 I had been suffering aggressive migraines in which I was hospitalised for each time. Tablets wouldn’t work, changing diet didn’t work and even injections didn’t work. In 2018 we decided to investigate what was going on in my head by having an MRI scan at Benson radiology. They said to us “We found nothing in your head, your migraine causes could be genetic” as my mum had also suffered migraines before she had me. On July the 15th of 2021 was the date my unknown AVM in my brain burst (haemorrhaged) But we didn’t find out until I got rushed into hospital and they put me through an instant CT scan. At first, we just thought it was another migraine but to me it was a different type of pain, it felt like somebody was bashing me with a baseball bat repeatedly. I was also vomiting up dark brown blood this time. As I finished the CT scan the doctors came rushing into the room where the radiologists were, and my family noticed and thought something is wrong. The doctors also mentioned that I was Born with this AVM, but we didn’t know because when I had my first MRI, the radiologist people said I had nothing in my brain.

As the doctors were still accessing the scans, I got sent into emergency to be having a close eye on because I was still vomiting out blood. Another scary situation the doctors said was only 30% of people with AVMs survive and the doctors also said that if it wasn’t for my fitness, I would have died on the surgery table. They were so surprised that I still lived and recovered from this event.

AVM explained; An arteriovenous malformation (AVM) is an abnormal tangle of blood vessels connecting arteries and veins, which disrupts normal blood flow and oxygen circulation. When an AVM disrupts this critical process, the surrounding tissues may not get enough oxygen. Also, because the tangled blood vessels that form the AVM are abnormal, they can weaken and rupture. If the AVM is in the brain and ruptures, it can cause bleeding in the brain (haemorrhage), stroke or brain damage. The cause of AVMs is not clear. They’re rarely passed down among families. Once diagnosed, a brain AVM can often be treated successfully to prevent or reduce the risk of complications.
After an hour, a senior nurse and doctor came up to my family and asked “Has Liana ever fallen over? Or has there ever been a history of brain bleeds in your family?” My family instantly looked at me and that was when I knew something is wrong. The nurse then explained that I had an AVM in my brain which burst causing that bad sensation of pain I was feeling. The doctor then said I would have surgery in about another 6 weeks which scared my family and myself. Thankfully, covid came in and I was the first on the list to get the surgery. On the 23rd of July 2021, I had major brain surgery. Pre-surgery, they removed some of my hair, they put fusers over the spots on my head for the doctors so they know how to manoeuvre in my brain to get to the AVM, and they limited my food and liquid intake. When it came to the surgery process, they took the AVM out and drained my blood that was pooling in my brain. They also removed a chunk of my skull out from the right side of my temple and replaced it with a titanium plate. After 8 ½ hours I was in ICU for 5 days then transferred to a ward and was there for the remaining 2 ½ weeks. I was checked on very closely, making sure my blood pressure was low, checking to see If I could talk and checking on everything in my brain after the surgery. I found out that at one point after surgery my blood pressure was out of the roof high and the doctors had to give me a drug that is not yet approved from the government so my parents had to sign saying that I am able to have the drugs, after I took the drugs my blood pressure came back down. I had to learn how to walk again as I lost my balance, I had to learn how to eat again, and I also had to learn how to think properly again. And for a while, my left side of my body went into a bit of paralysis.
I also lost my Vision and had problems with my left eye. I couldn’t drive until my vision and peripheral vision came back. While in hospital, as I was on heavy drugs, I was experiencing hallucination for several weeks. I couldn’t concentrate for longer than 5 minutes and had to go through a month of full rehabilitation. In Rehabilitation, I had to rebuild confidence and had to learn how to go back out into the world. I was doing rehab with a speech pathologist, Occupational therapist, Physio, Recovery doctors, Neuro phycologist, eye doctors and Dietitian.

Their roles in helping me with rehabilitation was- Dietitian: Helping me learn to eat again as I didn’t eat for 3 weeks straight in hospital as I was awfully sick, Neuro Psychologist: Helping me to re gain memory and learn how to concentrate again. Eye doctors; Testing my eyes to see if My vision is healing, Recovery doctors checked on my pain in my head and did heaps of scans too ensure everything in my head is healing properly, Physio taught me how to walk again and how to get back into my fitness routines, Occupational therapists taught me life skills and getting back into my routines such as catching the bus, navigation where I am and how to get back, how to catch the bus again and how to multi-task and the speech pathologist taught me ways on how to learn new ways of thinking and how to control my anxiety, and how to cope with thinking patterns and return to school.

I also suffer terrible anxiety since surgery. When I came out of hospital in August the 5th, I could not enter my room or sleep in my room because of the traumatic events that had happened. I didn’t sleep in my room for nearly 2 months but then regained confidence to sleep in my room alone. Catching the bus was also another challenge because I felt scared being alone. I still cannot be alone because I start shaking and panicking. Also, for a while I could not enter a hospital or even look at one without crying or shaking because of the trauma within me.

I have become more emotional and anxious since surgery. another problem that I experience is people don’t understand what I have been through, and it is hard when they pressure me or talk about head injuries because I start crying and shaking. When people don’t understand what has happened, they try make it better, but they make it worse instead. And nobody can understand my anxiety and the impact this event caused on me, so it is hard for me when people see me physically okay but not mentally.


It’s a really awful thing that happens to us. You are so young. I’m so so sorry for what you have been thru. I also had a brain bleed that caused a stroke. I was dieing and they had to fly me to another hospital for surgery. I was so afraid at each thing I had to go thru. They put me in an induced coma to life flight me. I was asleep for about a week I think. I was in the hospital for a month. I had to learn to walk again too. I was fortunate at my age that I did t lose movement or talking etc. I wasn’t paralyzed. So grateful. But I’m 66. So it’s hard for me to hear how young u are and what u went thru. Your a hero. That’s so much. It’s amazing that u have done so well. We can be thankful we are in that 30%. Take good care. Everyone says it gets better. Just need patience and strength.


Hey Bucky,
My name is Merl. I’m a member of the Modsupport Team here on Bens Friends and I too am in Adelaide, well, near Adelaide at least. It was actually you mentioning ‘Benson’s’ that made me wonder where in Oz you may be. Ohh, next door :rofl:
Our neuro journey’s also have some similarities, unfortunately.
My situation is not directly AVM related, although it is neurological/neurosurgical.

As a youngster I had ‘headaches’, but they were put down to ‘growing pains’. I was given medication for the pain, but nothing identified. Had all sorts of ‘oddball’ sensations, but nothing was identified. Because nothing could be identified, they then decided it must be a psychological thing because ‘You just can’t be having pain like THAT…’ but I was. I learnt to shut up and say nothing.

I got on with life. 20 yrs later I’m driving down (Main North) road and the lights went out. I couldn’t see. I pulled up on the side of the road and called my girlfriend. She took me to the hospital, they did a CT scan and came out with the line ‘Ohh, look what we found…’ like it was all something new. I’d been telling them for years something just was not right.

Since then I’ve been on a bit of a medical rollercoaster. I’ve required 6 neurosurgeries so far. Every time I think I’m past it all, something else pops up. I’ve had big issues with CSF flows and now have a shunt to drain the fluid from my skull. The shunt has had issues all of it’s own with blockages and breakages of the tubing.

And I’m sorry to say it so bluntly Bucky, but, they never will.
You have been through a life changing event. Some people don’t seem to be able to comprehend this. Some think of a brain injury as being similar to a sore arm or a sore leg. I call it the ‘broken bone theory’ ie You break your arm. You go to the hospital. They plaster your arm. 6-8weeks later it’s all healed and life goes back to normal.
But we’re not dealing with muscles and bone, we’re dealing with the brain and the healing is nothing like the same. No 2 brains are the same, no 2 brain injuries are the same, so trying to draw some sort of comparison is near on impossible. The number of times I’ve heard that line ‘Well, my friend Mary had one of those and she’s OK…’ annoys me something terrible. One centimetre to the left and the effect on ‘Mary’ compared to ‘John’ can be HUGE. I have ‘tried’ to educate others of the realities of what I’m trying to manage and they look at me confused, then say things like ‘Really?’ as if this is all a joke or I’m exaggerating. As another member has stated ‘They will never understand it until they’ve had to live it’. One of my other pet hates is that line “ohh, you poor thing…” sympathy gets really old, really quick and I quickly had my fill.

My life as I knew it has changed, my acceptance of that fact has not been easy. I don’t want to be “HERE”. I had a life, I had a profession. Well, that’s all gone. Now what? And pulling myself out of that pit has been a battle. I needed help, I had to ask for that help. I saw a psychologist and used the services locally available to get the assistance I needed and that is an ongoing process. Trying to battle through all of this alone can be VERY difficult (I know, I tried… …ohh what a mess!!!). There are services there to assist, use them to your advantage.

We know what this journey is like because we’ve lived it too, so come talk to us.

Merl from the Modsupport Team


Hello survivor in Australia.
Well done for getting through it so far and I hope your youth and fitness help you.
I was 19 when my avm ruptured in UK. I don’t remember much about ICU and lost some months of my life.
I’m over 50 now so have had more years in recovery than pre bleed years.
It can be shit during recovery and now I’m slowly going down hill again as my brain is ageing quicker than an average one.
Enjoy as much as you can now because the avm may try biting again later.
Some days I can still be positive but I thought I’d share some realistic experience with you.
Good luck


Hi @BuckyBarnesWife

Firstly welcome to the AVM family and secondly please don’t feel alone… its great to see another fellow Australian in here as there are many of us… by the way I am from Sydney!

In short it is a traumatic time 100% as I had this happen to me at 30 in 2010. I found my AVM by accident and after 1 month I had a bleed while at home alone, which I could not get off the floor etc and was VERY lucky to call 000 at the time.

I had mine also removed with surgery and it was very hard but I can say after many years now things get better and we slowly recover and overcome these hurdles… on the positive side you are here today and can see your family and friends… it could of easily went the other way.

All I can say is please look after yourself and feel free to reach out to the family here whenever you are feeling you need some reassurance. You are still young and have your whole life ahead of you… you wont forget this chapter in your life but i can assure you it will mould you into a stronger person for the future.

It’s definately hard to cope at times but its only improvement from here moving forward… the hard stuff is done and now its time to live your life… I would suggest seeking counselling if needed to help you ease the pain over the trauma this has caused… its not uncommon to feel this way as we are human BUT please remember you can talk, walk, see, hear and are ALIVE… some don’t get that lucky… God bless!

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AVM may try biting again later? what does that mean?

I suspect they meant that the avm may come back to bite you in the rear, also known as returning.

Sharon from ModSupport

You wrote that you had trouble with your vision after the bleed. I had problems too but they cleared up after 1 year or so. Now I have vision problems again. This is just an example of the avm biting again. 30 years post bleed and suddenly my vision can go all blurry for a day.
Like you say, physically I look normal so people don’t see the problems I have. Some days I am mentally focused but other days I am not.

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You are so right… my daughters has had a burst AVM / rupture and had to be operated on. … we are two years down the road and still we are nowhere close to what she was like pre AVM surgery… no two brains are the same, no two people are the same and we all have different hurdles to jump over and cope with… my Daughter was 17 when it happened… its a looooong road for some and a short road for others…

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Some medicos like to point to the ‘short road’ recovery as being the norm, BUT that is not always the case. Trying to get that message across to those medicos can be extremely difficult. As one specialist said to me ‘I’m the Dr, I’ve completed years of study and I know… …you? you’re just the patient. You wouldn’t know…’ My blood boiled instantaneously. I was so angry and frustrated with the attitude. No amount of study, no qualification can give them the hands-on reality of trying to manage it all.

Now, in saying this, the last neuro I saw, a young lady, actually stated ‘We do not know everything about the brain. We’re still learning. Some people can come through it all relatively unaffected and recover really well. For others the recovery processes can be ongoing and we don’t know why…’ I have been on this medical roundabout for over 20yrs and this was the first time EVER that a Dr has admitted that their knowledge is not as comprehensive/All-knowing as some may profess. After the appointment I said to my wife ‘Did that REALLY just happen?’ and she agreed, that was a first.

Merl from the Modsupport Team

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Amazing! And, undiagnosed originally :face_with_raised_eyebrow:

When, I was young I suffered a lot from severe migraines. Never thought much about it, that was maybe from ages 10-14 or so - I was 14 when this bastard was first seen. I suffered a concussion as a result of a fight I was in(I did not start the fight) and was hit in the jaw with my skateboard < that was the last thing I remembered before waking up for a second in the back of the ambulance then in a CT machine to first hear the term “AVM” - I’m in the US & English is a 2nd language to both me & my parents. My parents completely missed what the Doc said. . . .But, the only thing he added was “keep an eye on it”

Fast forward to July 13th of 2020 & it ruptured hard - apparently it wasn’t my first rupture according to my neuro’s

Anything can do anything - it can come back, or you can be cured & recover very well. Don’t let some of “us” scare you too much.

But, it’s a frightening place if you let it be - I suffer from fairly serious anxiety & PTSD now. It not easy for me to see myself being 100% to laying 3/4 of the way dead in a blink of an eye

From what I understand only surgery completely “cures” the problem
Embolization is only for like very small AVMs but I have also heard form doctors Omar UCLA that embolization + Gamma Knife works
I think the medical community is mostly scared to touch AVMs
One doctor was terrified of embolizing the AVM

I wonder why they never picked up a AVM with your MRI?

I felt happy during surgery finally someone was going to see with their own eyes :eyes: AVM remove it and cauterize it.

How big is your AVM?
Have you checked the MRI it with multiple doctors to see their opinions?

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So you also told them about your headaches and they never did or did they do an MRI?

My AVM/dAVF is/was about 3.3cm I believe

Fully obliterated on 1st attempt :pray:

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So how many “tentacles” it had?

I’m sorry I don’t know the medical word.

Did you chose embolization or did they recommended embolization?

Feeders is term I believe you’re referring to. . . I don’t remember them mentioning me having multiple feeders.

Embolization according to my neurosurgical team was my only option, due to it’s location. It’s located even with my left ear about 1" back. If the embolization didn’t work, they’d go for multiples. And, if they had to do a resect I would be in very bad shape < their words. The left lower side of my cranium & ear would have to removed - I am very glad the embolization took, to say the least.

When they were initially told about the headaches MRI’s were not available, CT was the new technology back then and as new tech it was only available in large city hospitals. The closest they came to looking at the brain back then was to look at the back of the eye. Over the years there had been a few indicators that something was amiss, but none of the medicos lined up the dots/indicators. They aligned my symptoms with a psych issue ie ‘You just can’t be having symptoms/pains like THAT. We think it’s all in your head…’ (Little did I know just how real that line of ‘We think it’s all in your head’ really was) but after all of those psych ‘fun’n’games’ I soon learnt to keep my mouth shut.

It wasn’t until many years later, when I had a major incident and lost my sight whilst driving, that they finally did a CT scan and due to that being ‘Abnormal’ then an MRI was ordered.

Merl from the Modsupport Team

Wow! You have been through it… and you have come so far! I love your honesty and bravery. Your reactions are completely normal - you have been through a massive trauma and it doesn’t just stop once you have had surgery. Are you having counselling/therapy for your anxiety? That’s so essential for you.

My daughter, aged 11, is about to have a craniotomy to remove her AVM…2 weeks to go. We’re staying positive but also anxious about the procedure and recovery. She is receiving counselling through her school which is great.

I really wish you the best. Think how far you have come and focus on that. You are so strong!

All the very best,


It’s crazy how medicine can advance

The next thing is functional MRI for people with seizures

I was told in 10 years they will have the best machine that will really help for people like me with grand mail seizures

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Wow! Congratulations on recognizing that ‘THE’ headache was different than the severe migraines experienced for years. That was the case for me, too! If I had not determined that I had better call ‘911’ STAT, I would not be communicating with you now.

Regarding diagnosing the AVM: My AVM was diagnosed urgently by means of an arteriogram, in 1993. Even today, I believe it is the ‘gold standard’ of diagnosis. I was blessed that the medical doctors were familiar with all the factors that suggested that I MIGHT have an AVM, and greatly blessed that a skilled neurosurgeon was on call.

Regarding others understanding what our experience has been and continues to be: They won’t. It had been decades since my surgery and it hasn’t gotten easier. People here ‘GET IT’! Our experiences are both similar and yet different. We care.