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AVM Survivors Network

AVM surgeons in Australia

#1

Hi everyone,

First post, woohoo! Anyway, down to the AVM.

I have an AVM in the palm of my left hand. It first blew up about 3 years ago now. I went to see my GP, got some ultrasounds/CAT scans/MRI scans, then two surgeons (one in Hobart and one in Melbourne). They suggested it was nothing to worry about and they didn't feel comfortable operating, although the second one did take a biopsy that ultimately revealed nothing beyond what the other tests had already done.

Now three years later my index finger has a lot of pain and it feels to me that the lump is getting bigger. I would be interested in surgery/embolization/any other treatment to help. Does anyone know any practitioners in Australia who could help? Thank you.

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#2

Welcome to the site, Krabo. You may want to tap in to your Aussie and New Zealand friends for a doctor referral. You can join the group at:

http://www.avmsurvivors.org/group/australianavmsurvivorsgroup

All the best!

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#3

Hi, first of all Krabo try and get on to the AVM extremity group as you will find other people with similar issues to you . My daughter has been treated for an avm on her foot at Westmead in Sydney. I know there is another doctor, Hayward I think is his name who treats avms. I have posted things on the Extremities group and I found some names of other people. You really do need to get a surgeon who sees avms regularly. Our daughter was under Dr Lord but I think he just does kids. Dont be afraid to ask how many avm embolisations they do. I will go through my notes and see if I can find other recommended surgeons. Keep in touch .

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#4

Just found these.
Dr Ken Thompson
Dr Cloust - think these are in Brisbane

Also a really good idea is to contact Dr Wayne Yakes in US. He seems to be a world authority on AVMs and has a list of drs he has trained or who he feels are v competent. I d try that. Good luck !

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#5

Thanks for the names munchkin. Have you heard of Dr Milton Waner? I have heard he does a lot of work in this area. Thanks once again. James

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#6

No I havent heard of him. Where is he based? I suggest you post that question on the extremeties site and you may well get a response. There is also a FB site. Good luck!

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#7

I’m from Sydney and the only surgeons I know are the neuros that did my surgery on my brain AVM…if you wish I can give you their names and maybe they can point you in the right direction… God bless!

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#8

Dr. Waner is an excellent extremity AVM doctor and he is located in NYC. there are several people on this site who have seen him.If you look under our "Doctors" list at the top of the page, you will find his info and others to contact. Also, you may want to post something in the Aussie group for specific docs there.

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#9

Hi Adrian,

Sorry for the delay. That would be great if you could give me their names. Thank you.

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#10

Just noticed that you can contact his clinic with questions.

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#11

Yeah I was going to send him all my patient records for the AVM treatment and then work out where to go from there.

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#12

HI Krabo,

I have an AVM in my brain, is been treated by Doctors at Macquarie Neurosurgery in Sydney. Di. John Fuller is my Doctor. I would recommend them to any body. Good luck.

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#13

Hi. I have AVM on my brain the 2 I have positive experiences with are A Prof Smee at Prince of Wales and Dr J Day at Wollongong hospital. Not sure if they treat other parts of body. Best wishes.

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#14

That’s ok you can try & contact Dr Erica Jacobson from Prince of Wales Randwick NSW or Dr Davies from St George Private Kogarah NSW… God bless!

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#15

Hi Wilco,

My Wife was diagnosed with an AVM in her brain and due its location the neurosurgeons mentioned operation was not an option and they suggested us to see other option, it’s called stereotactic radiotherapy.

If you don’t mind can you share your experiences please with the stereotactic radiotherapy, what type of stereotactic radiotherapy you did , any side effects, how long until get the AVM gone and any information related please. I tried to find information related to the treatment and pray for her.

Thank you so much

Our prayers are with you

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