Australian avm groups

Hi Jenny

I suffered a subarachnoid haemorrhage due to a brain stem AVM when I was 14 (in 2002) I am now 29 it’s been a massive journey to say the least. The AVM was only discovered after it ruptured. I underwent surgery to remove the AVM completely and resect the blood vessels. The bleed damaged my cerebellum and I had to regain my balance and coordination, among all the other things that we stroke survivors battle through!

I am from South Australia and living in adelaide.

I would love to share more of our stories as I have found it very difficult finding others out there who had a similar experience. It can be a very lonely journey at times! I’m sure a lot of people on this network can relate to that.

I wish you and your daughter all the luck and best wishes for a steady recovery.


Thankyou for replying
We too live in Adelaide ( west lakes )
My daughter is nearly 7 months since her hemorrhage and is doing well
She lost movement on her right side
Loss of right vision in both eyes and slight brain injury
All in all its amazing that she survived and for that we are extremely grateful
Mandy is 44 and would love to catch up with other south Aussies who understand what she’s going through
How is your health now and have you ongoing problems
Wishing u well and Thankyou again

I do still have ongoing problems, physically and mentally.
I now suffer from chronic pain in the stroke affected side of my face/head. Recent scans show a lot of scar tissue affecting several facial nerves which is consistent with my pain. At the time of my stroke, those nerves affected went completely numb, but as time has passed, the sensation has come back and unfortunately pain along with it.
I also have double vision when I look to my right and my fine motor skills become harder to control when I’m over tired. But as you mentioned, I feel extremely lucky that I even survived this brain event and the outcome was much better than initially expected!
I developed PTSD and depression several months after my stroke and still battle with mental illness to this day. Since finally reaching out again, I have been able to find so much more support than what was available back in 2002.
I currently live in Camden Park and I would love to meet Mandy whenever she is ready.

All the very best,


Hi Em
It would be lovely to meet you so we will have to arrange a time suitable for both
Mandy is doing well but has still no feeling in right side but we remain positive that time will improve
We are at west lakes so not that far from you

I am taking Mandy on a little 3 day cruise tomorrow to give us a time out from the stresses of life so hopefully we can chill out and get spoilt
Looking forward to meeting you
Jenny and mandy

Do anyone know of any good neurosurgeon who can perform the procedure here in Australia. I have a brother with AVM and I am looking to bring him here for surgery but need to know who is good at what they do here.

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Hi. Depending on the size and location of your daughter’s AVM there may be different treatments on the table. Run it by the people I suggested at Macquarie as from my experience (7 years of this) they are the best equipped and have the most experience to assess her situation and offer her the best hope.
I have an 11yo son. AVM incidental discovery at 5, Linac radiation at 6 (wrong treatment for him), AVM rupture at 9 1/2, AVM rupture at 10, Gamma Knife last week. AVM location Right Basal Ganglia and extending into ventricle.

Hi I am newish to the group, I was dignosed 4 months ago with a 2.5cm avm and have been on the Cat 1 (urgent) waiting list since then. I am on the Sunshine Coast. Do any of you know if waiting lists are shorter in diffrent states? My Dr is happy to refer me to another state.
Its nice to hear that there are some people from Aus (also not so nice sorry, I hope you are all doing ok).

Cheers Katusha

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Hope you are doing well

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Hi Christine

How are you now? I am due for an emoblisation and Royal Melbourne hospital and wondering if you have any feedback regarding who advised to do so?

Hi Raf. Sorry I’m only just seeing your message now. My son Jack is doing OK. He hasn’t had embolisation though I wish he could have as it would have been an instant resolution. His AVM is too deep and unstable so has had Linac and Gamma Knife radiation. His latest MRI last month showed there is still some AVM though a lot of the veins have resolved. Radiation is still active. Not sure if we’ll be able to obliterate this thing but still holding out hope as he can have no further treatment. He’s nearly 15 now and this has been a 10 year battle with two ruptures along the way. His team are at Monash Hospital. Jack’s case has actually been conferenced around the world in many different specialties as well as the team at Mayo Clinic, Johns Hopkins and even the world’s leading specialist, Robert Spetzler (prior to his retirement) advising on his case. The later came in after the Linac radiation changed his AVM in a way that has never been seen before and he went from a one in 5-10 million per year to a world first.
I don’t know the team at Royal Melbourne though any teaching hospital has the best specialists. If you would like a second opinion I can refer you to someone if you have scans you can send off to Sydney or you could run it by Andrew Danks at Monash Hospital.
Be assured that in regards to AVMs most cases are not only seen by your own specialist but quite often conferenced at monthly meetings between a number of other specialists in the same field with the most complicated being conferenced Australia-wide. You could ask your specialist if this has been done prior to your surgery if it will bring you some comfort.
When are you due for your procedure?
Please know that we are here to provide whatever support we can to you and your family while you go through this process. Although the treatment is different we fully understand the headspace you and your family are in now.


How is everyone doing on here? It’s been some time since I’ve popped in as my son keeps me pretty busy. His condition is always changing lol.


Hi all. I am not sure yet if I am posting this right or replying to someone else. Sorry in advance if I muck it up. This has been a world-wind 2 weeks for us. My son who is 20 was diagnosed with a R cerebellum AVM with an aneurysm. It is considered small (but I am not sure that is a good thing). He has no symptoms but it was inadvertently discovered on an MRI the week before he was to return to University in the USA. To give the decision some context he is beginning 3rd year. He studies, works for the university as an RA and in the IT department as well as working on a project which develops AI technology for medical applications. He is also president of the University financial/investment club. He is incredibly smart (genius level) but you wouldn’t know it. He’s incredibly social plays soccer (and use to row) on the Uni team. Needless to say he is a little busy. He relies on his ability to relay complex ideas and communicate effectively and is really worried this will be affected. He is really stuck making a decision on surgery now or trying to put it off until May which is the start of his summer break and 10 weeks off. We can find no information on the risk the aneurysm adds to this. What are the real risks and recovery from Surgery? Will 10 weeks be enough to then function again at a high academic and work level? Oh and I should mention that where he is in the USA you would NOT want them to be working on your brain! Airlift to the Cleveland clinic would be good but I am not even sure that is an option if it ruptured? Is there time for that?

It will be almost 4months since my avm surgery ans I’m praying that I get clearance to go back to work on Monday. Fingers crossed!

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That’s three new Australians in a week!! Welcome all!

@Bsmom I often stray rather too close to giving advice (and this forum is about personal experience because we are not doctors) but I think the questions I’d ask would be how the doctor views the risk. Since it is an incidental finding, especially if he doesn’t have any symptoms, then it may not be actively doing him much harm. It’s a good thing to know it is there because it means you could do something about it.

Sometimes these things are in a very inaccessible place in the brain – too dangerous / disruptive to do anything about and the advice from doctors can be that you’d lose more function trying to fix it than it is worth, so some have to be left. If you’ve already had sufficient advice to indicate that an operation is the best course of action, then your consideration of when to do that is a good one.

@Ben wow! Reading your profile shows you’ve been through quite a time! How are you doing?

@Raf, when are you due for the embolisation? I notice you say you have a DAVF, which is the same as me and the same as @AlwaysCurious who is in Australia (I’m in England). If you’ve got any questions, shout them up.

What I’m inclined to suggest is that you each start your own story in the New Members section or elsewhere, as I think the conversation will get complicated with you all in the same place but it is really helpful for you each to know you’re all in Australia.

We do have a group @Australians that you can join so that in future you can keep track of who’s who or come back here to ask Aus-specific questions.

Hi @Bsmom

Hope you’re keeping well during this difficult time as we battle the Delta variant! It’s difficult to give general advice as each individual’s recovery varies and it would be best to have the medical experts decide on the timing etc… considering his age you’d think getting it done over the break would seem reasonable but then again we don’t know how he is going to recover but rest assured the chances are he will be fine and not have too many issues.

From first hand experience I would say I’ve never been the same ever since my removal in 2011 but nonetheless grateful cause I did suffer a bleed and glad I’m alive… that is the bigger picture here to be honest… he may want to wind back strenuous activity like heading a soccer ball until he gets this sorted… God bless!

Prayers out to you mate… God bless!

Hi @Christine_O hope you guys are doing well especially battling this mess they call Delta out here… been in lockdown since late June in Sydney but nothing appears to be improving so it’s quite concerning & frustrating… other than that I can’t really complain it’s been busy raising 3 young boys under 7 and working but grateful nonetheless… God bless!

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I got it I got my woek clearance I have medical tomorrow which should be no problems and now I can get my life back!. Someone asked what type of avm it was and it was right parieto occipital avm


Ibstruggled with two kids for a week in lockdown i have no idea how you would do it especially since there is no sign of it ending

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