Australian avm groups

:grinning:Avm in
Hi I am new on this site and was wondering if there are any Aussies on here
I am in south Australia
My daughter 44 suffered a massive rupture in the basal ganglia due to avm
She survived ( thank god ) but has lost feeling in her right side arm and leg plus has hearing and eye problems
It’s been three and a half months now and she is in rehab
Every day she amazes us with her improvements but she has a long way to go
I am hoping there may be other people who have had similar bleeds that can offer information about their recovery etc
Thankyou all

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Welcome Jenny! It sounds like your daughter has come a long way since her bleed and great to hear the progress she is making. You’ll find a huge variety of experiences on here, patients, care givers, relatives from all over the world, and I have seen some from Australia. Again welcome, and I wish your daughter and you all the best. Take Care, John.

Thankyou
Yes she’s made amazing progress and continues to improve daily
What I would like to know is how long did it take ( if it did ) for feeling to return to arm and leg
Mandy is now three and s half months post bleed which caused a catostrophic stroke and lost all feeling in her right side
The doctors really play it safe and say they don’t know and I realise everyone is different but I am curious
Thanks again
Jenny

Jenny,

Welcome! There are quite a few Aussies here and, as you might imagine, a good proportion of those in either Sydney or Melbourne, I think. I can’t bring too many to mind at the moment.

I think @Adrian1, @Amanda_Buykx and @Christine_O are in Oz.

Richard

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A post was split to a new topic: Australian Members

Hi Jenny, As DickD mentioned I am from Australia, Sydney to be exact!

Hope your daughter is doing well and rest easy knowing she is not alone and not the only Aussie that is going through this… get her to be positive and strong as she is still young and there is light at the end of the tunnel.

If i can assist in any way please feel free to just ask… God bless!

Thankyou Adrian
We like all of you I guess had never heard of avm till this happened to Mandy
I have been researching and using this group to learn as much as I can to help her and us understand the treatment options etc and get some positives from many other people with avm
We see the neuros on Monday for their opinion on how best to treat it
It looks like they will most likely do gamma as because Mandy’s is in the basal ganglia region it appears that this will be the only option
I am in constant fear she will suffer another bleed and will be until this thing is gone
We are so fortunate that she survived even though her recovery will be long and hard
She is amazing and very determined to regain as much of her former self as she can
Thankyou again
Jenny

I can relate to your concerns, however dwelling on them will not help and you guys need to move forward and get over this hurdle… God bless!

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.

Emily

Hi
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
Jenny

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,

Emily

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.

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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.

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