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#1

Hi, I am Adam an indigenous Australian male, exactly a year ago I started to have seizures while I was working at my book store(by my self) and I did not realise what was happening the first two times, paramedics attended but I denied a trip to the hospital as I just thought I was having low blood sugar because I do not eat while at work. On the third seizure I passed out for an extended period of time that they were able to do a CT scan whieI was still unconscious. Once I regained consciousness I was informed they found an AVM on my right temporal lobe that had ruptured I had no idea what an AVM was but it was scary I live about 300km from the capital city so I was told a helicopter was on its way for me. I denied it and told them I would come back in a week not really understanding the gravity of the issue, the gave me anticonvolsants and I went home to let my wife and two young boys the news a week later and without taking the meds I made it back to the ED of the local hospital within minutes of entering the ED I had another seizure and the next thing I remember I was at the neuro ICU at the RPA in Sydney. Not really sure of what was happening I once again discharged myself as they told me I had 2 weeks before my craniotomy so I again self discharged and said I would be back in a week for observation. I was then told to get right back as my nurosurgin wanted to operate straight away that included 3 clips in my brain followed by a further embolism after my operationI once again self discharged on day 3 post operation after a racial charged incident targeted at us from another patient over my wife’s accent. Since the operation I have suffered from crippling nuropathic pain on my right hip and knee combined with three strokes that has given me left sided weakness. The last year has been full of mental health issues, non stop pain, fatigue along with a complete change in personality and self identity issues and secure depression. Before the operation I was self employed running my own bookstore now I have lost that and all self worth. Any ideas or help on how to cope as my family do not deserve to go thru this. My current status is inactive and my health is going down fast over the last year due to poor aftercare and bad cultural understanding with the funny part being that it was Close The Gap Week focused on improving indigenous health.

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#2

Hey Adam,
I too am in Oz, about an hour north of Adelaide
Being outside of a capital city can make it hard enough but then to be self discharging with what technically is a traumatic brain injury, ohhh, never a good idea. Now I say that but then I too ignored symptoms for a long, long time and then by the time I did act it was an emergency situation and all choice was taken from me. Post surgery (craniotomy) I was in so much agony there was no way I was going to self discharging, I was lucky to be to get from my bed to the bathroom, let alone out the door.

Are you back at home, in a regional area? Accessing services in a rural setting can be very difficult but in saying that, in my former life I used to assist people with disabilities and had to access all sorts of services to meet their needs. If you need a hand to get some assistance I’m more than willing to investigate what services maybe available to you and how best to access them. I do have some understanding of some of the cultural difficulties and completely respect that the choices here are completely yours. All I would be doing is providing you with the information and if you wish to follow through then that is up to you. I know the system, I know how it works and how to access the services. IF you want a hand please ask. I’m more than willing to look into it if you’d like. Having been in a similar situation to your own I have a fair understanding of it and trying to deal with it all on your own ain’t easy.

Please let me know
Merl from the Moderator Support Team

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#3

Welcome Adam, its great you’;re here and sounds like you’ve had one rough ride so far! I’m from Canada so can’t provide much insight into trying to get the medical stuff lined up there but do have some experience dealing with these things. I had a left temporal AVM that introduced itself to me via rupture in May of 2016, and I ultimately had Gamma Knife.

There is a lot of folks here who have a ton of experience in dealing with challenges associated to these things, and recovery. I hope some chime in. No two of these things are the same but we understand challenges associated. The fact you joined up with us is great and I’m sure will be beneficial. I would take advantage of Merl’s offer and experience! He’s on here often and knows which way is up and helps us all! Take Care, John.

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#4

Hi Merl thank you so much it is great even just to hear the support is there for me the last year has been the most difficult of my life I must say I have not cried so much in my life. My head is foggy and the worst part is I feel like I woke up after the operation a different person. I am finally seeing a psychologist in a few weeks so I hope this helps but thank you for your support it means the world to me and gives me hope as I feel I am physically and mentally getting worse by the week. Sad to say I felt stronger after the operation then I do now. Thank you

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#5

Thank you very much John and yes I think this site will really help as I have kept myself hidden away for the last year because living in a small town and falling from grace as it may be with the loss of my family business I feel a lot of shame involved in this loss regardless thank you for your support every bit is starting to help. Thanks

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#6

Hey Adam,
I completely understand ‘I feel like I woke up after the operation a different person.’ I mean, let’s face it, it’s brain surgery. That thing on our shoulders (our heads) contains our brain, the bit that makes us who we are. This was one of my biggest fears. I’ve had the ‘joy’ of enduring a few neurosurgeries (6 so far) and each has knocked me harder and harder. Anybody who tells you this is all simple to deal with has never been here and quite frankly, wouldn’t have a clue.

It’s great that you are now seeking some assistance, so well done. Identifying what assistance you may need can be a big step. Psych is very important, but only part of the whole you. Accessing services as part of the ‘whole of life’ needs is also important and as time goes by you may find identifying those needs a bit easier. I know (Ohh boy do I know) asking for assistance can be real hard, but there are services out there that can help, in fact it’s their job to help. Some of us blokes think “I can do this all on my own” and yea you probably can, but it’s one hell of a hard slog doing it alone. I know this because I tried. I had the same rubbish rolling over and over and ov…… in my mind. What a mess. I was getting nowhere fast. I had to get to a point of saying “Help”. As I’ve said to people here before and I’ll say to you now, ‘Use the services available to your on advantage’, it can make life that bit easier. They can’t solve it all, none of them can, but every little bit helps. And for the sake of your family use them to your advantage. Some of us see asking for help as a weakness, it ain’t, in fact far from it. It’s a sign that we’ve thought about it and can see we need it. That is a BIG step to take.
Do not, DO NOT!!! be trying to do all of this on your own, you will burn yourself out in no time flat, take it from someone who knows from their own experiences.

Merl from the Moderator Support Team

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#7

Hi again Merl I would like to take you up on your offer for support services as after a year I would like to move on with my life and I was wondering if you could help with a bit of information, I read a life expectancy study over 15 years of crainiotomy patients in Europe that stated the average life expectancy after surgery on an AVM was 15 years, I checked with my GP and he could only say that 15 years would be if I did everything correct (and I am not) I was just wondering with your experience what you feedback on this would be as the best I can find at the moment is 13 years post on. Thanks and sorry for such a morbid question.

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#8

Hey Adam,
Look, as far as I’m concerned don’t be worried about the ‘morbid’ questions. If you’ve got questions, you ask. I DO NOT HAVE ALL OF THE ANSWERS but if I can help, I will. Believe me when I say we all have those similar ‘What if’ questions when it comes to the brain, well, I certainly did (and still do to some degree.)

I wouldn’t be putting too much faith in those studies. If you go reading through some of these pages you’ll find all sorts of differing stories from people who bounced back almost unaffected from surgery to people who are damn near wheelchair bound as a result. I do hope that your 15yr life expectancy is wrong because using that measure I should be dead as my craniotomy was back in 1996.

As I say I’ve had a few neurosurgical procedures and each has knocked me a bit harder but I’m still breathing. Statistics can be funny things and depending on the sample of people used for the study the results can vary vastly. As I’ve said to many people the internet and ‘Dr google’ can be a great resource BUT it all has to be looked at as general information and not so much a bible or a rule. We can easily go down the worst case scenario lines, well I did anyway, but as time has gone by I’ve learnt I have to manage all of this for me, not the dr’s, not the medicos, not everybody else with an opinion and certainly not for the statistics, but for me. Is it easy?? HELL NO. But the reality is that only I know how bad it is for me. People maybe able to see my discomfort, they may see my pain BUT what they see is tiny compared the reality of it all. As someone else on here states “Brain Injury: You’ll only know it if you live it”

Initially, every ache, every pain and I was like “Is this it??” but as time has gone by I have learnt which pains can be managed and how best to manage them. If ANYBODY ever tells you they have all of the answers IT"S BULLSHIT. No 2 brains are wired in exactly the same way and no two surgeries are exactly the same, so trying to draw an exact parallel between 2 different peoples experiences simply is not possible. Even in my own situation, no 2 of my surgeries have been exactly the same. So the internet may be able to give you an ‘idea’ but please do not be using that information as a bible or a rule.

Now I have to say here that as much as I may bag the dr’s and medicos we have to have faith in them when it comes to surgery, we have to trust them, we have no choice. Luckily here in Oz we have a fairly decent medical system, in comparison to some other parts of the world and their training is all based on ‘World’s Best Practise’.

But, Adam, if they recommend a course of action, then you NEED to follow through with it. I say this because at one point I didn’t and they can hold that against you for ever and a day. If their recommendation works, great. If it doesn’t, not so great. But if you follow through they cannot say that you didn’t follow medical advice. Not following medical advice can lead to worse long term results. Not what you want.

Merl from the Moderator Support Team

(P.S. You say you’re in rural NSW, but where. Just so I can investigate specific services in your region. No use me looking for services near Wagga if you’re near Bourke)

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#9

Hi again Merl and again thank you so much you have no idea how much hope it gives just to know someone has made it past the 15 year mark and are going strong. I live in Baggiest NSW and once again thank you

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#10

No problem Adam.
When I started this journey I was VERY isolated. I knew of no one who had been through anything like this. I had sympathy by the truck load, but sympathy gets real old, real quick ie “Ohh, you poor thing…’. Empathy or understanding, I found that in REAL short supply. I had to make my own path and that was difficult. This network has assisted me immensely in using my experiences, good and bad, to let others know 'Yea, I know because I’ve been there too…” and there is light at the end of that tunnel. And that light is not always a train coming from the other direction.

If we, the survivors can support others on this hellish journey the better it is for everybody involved and that is exactly what I ‘try’ to do. My info doesn’t come from a book, I haven’t learnt it in a classroom. This is a lived experience, you can’t get anymore first hand than that.

Others have supported me on my journey and I have no issues what-so-ever in passing that support on to others.

Merl from the Moderator Support Team

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#11

Bathurst. I think the auto-correct monster crept in :wink:

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#12

Yes it did thanks Bathurst

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#13

Thanks Dick and Adam
I had come to a similar conclusion, either auto correct or Aussie slang. But then there are some little settlements all over Australia that the locals know of that aren’t listed on any map, so I wasn’t sure. Anyways. Thanks for clarifying.

Adam, I’m not sure if you’ve tried to link into any services previously, so some of the information I’m going to provide may not be appropriate so you’ll have to do some sorting your self. Some have some real nice looking websites but this, by no means, equals the quality of their service. Some can say all the right things and sound very professional, but the reality of their ‘hands-on’ service can be anything but. The Australian government has brought in Quality Standards Framework to try and make sure that such services have policies in place to meet minimal standards BUT the reality is this is all on paper. But in saying that some of the information provided by a specific service can be very useful even if you do not decide to use their service.

For example, here’s a service http://newhorizons.org.au/
The other day I wrote about psych being important but only part of the ‘whole you’ that page shows a diagram which shows it a bit better.
image
Even if you find that a specific service doesn’t meet your needs, their resources maybe useful.
Also, at the very bottom of their page is a whole list of resources and useful links.

Go have a look, see if this maybe the sort of thing, the sort of service that maybe appropriate and let me know. This will let me know if I’m looking in the right direction. There is no sense in me continuing down this path if it’s not the type of thing you are looking for, so please do let me know.

Merl from the Moderator Support Team

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#14

Thanks so much Merl I have recently reconnected with the local hospital’s brain injury unit to chat with the clinical psychologist and properly start moving forward, I made a lot of progress this week in just asking for help, it has been a year next week since my operation and I expected to have moved on completely with my life but after spending some time here I have realised this is not the case. Unfortunately I have acted a little late and my anger has gotten the better of me and my real estate has finally had enough of me and has asked me to leave due to complaints from the other units on our block. I am trying my best to stop it all but I am starting to think I can’t be around normal people any more. Thanks again Merl and if anyone has had the same issues any coping strategies would be helpful.

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#15

Hey mate sorry to hear you are having such a rough trot I’m from the Mornington Peninsula Vic
I don’t have AVM in the brain but have thousands of them throughout my right side of my upper torso and have treatment every 3to5 weeks
It is very hard to digest the situation but it is most important to make your health a priority for your wife and children they would be lost without you no matter the situation money comes and goes but you don’t!!!
Even if there is an extended period of time in hospital for you it is all worth getting better don’t be so hard on yourself mate
You need to be kind to yourself to heal and be there for your family if you ever need to have a chat send a message

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#16

Welcome to this site, AdamD!

I just got through reading everything above and I feel overwhelmed by your trials and uplifted by the support of those like Merl. I don’t live in Australia and haven’t a clue regarding services offered. I also do not understand the cultural differences. But, I DO understand how difficult it can be to try to “do it alone”. My AVM and emergency craniotomy saved my life and for that I am most thankful. People did not survive ruptured AVMs such as mine TWENTY-FIVE years ago. (Did you see that? I am still alive after 25 years!).

You can not do anything about the past and your many times leaving against medical advice. You have to start with TODAY. You seem to be on the right track, acknowledging your needs and seeking assistance. You will have to work hard at recovery. Recovery from this severe trauma takes patience and perseverance. Use us as a sounding board. We understand. I certainly wish these folks were here for me 25 years ago!

Healing thoughts coming your way…

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#17

Hey Adam,
Sounds like it’s a good thing that you’ve linked in with some sort of service but I must say it concerns me a bit when you say “…I am starting to think I can’t be around normal people any more…” Isolation is not a good thing either though. I know this because I tried it all on my own. For me rolling the same crap over and over and ov…. is not a good thing, I need to be able to get it out of me, complete isolation halts this process.

I think your process of completely moving on is one of personal processes. I pushed myself to move on, problem was I pushed too hard too soon and did myself major harm. I don’t have a lot of patience with self. I want to be right and I want it right F$@#ING NOW!!! I’m not annoyed with others. I’m annoyed with self. (OK so I’m a bit annoyed with Dr’s, but that’s a whole other story). Each surgery has knocked me harder and harder, one of my initial questions for the dr’s was how long for recovery. What I have found is that that question of How long? Really is like asking ‘how long is a piece of string?’ No one can answer it. NO ONE!! Each person has their own recovery, so trying to compare is simply impossible. But you have taken the first step in getting help, that’s a plus. Sure it’s taken a while and by the sounds of it you’ve burnt a few bridges along the way, but take that ‘plus’ and run with it. But don’t stop with that one ‘plus’, look at what other services there maybe that maybe able to assist. Those services are there to help, use them to your advantage.
And Adam, if you need a hand to do so, then ASK!!!

Merl from the Moderator Support Team

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