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AVM Survivors Network

Specialists in Australia


#1

Hi all, I haven an AVM in my right cheek muscle and live in Adelaide. I had an embo in November involving installation of 3 coils and sclerotherapy with a saline solution. The lump has reduced by about a third and I’ve had strange throbbing/drawing off and on since the treatment. Is this normal after an embo?

Does anyone know of any specialists with AVM’s in Australia?


#2

Purdie,

Hi. I have a brain Dural AV Fistula which was treated by embolization in April last year, so a bit different from you, but I have been surprised by how long it has taken for me to feel better. Im not sure I’m better yet (and I may need a bit more work) but while an embolization seems like a very low impact treatment, I think it can take a long time to feel better.

The other thing you have is that your AVM, being in your face, is in a very sensitive location. The face is full of muscles and nerves, so any effect of imperfection is magnified. I had a carpal tunnel release surgery in my hand a few years ago and learned that the hand and face are very sensitive in this way.

I think you are still quite early post operation and more time may help you get better.

Very best wishes,

Richard


#3

Purdie,

My facial AVM specialist is Dr Tony Penington, he consults from the Royal children’s in Melbourne. I am very grateful to him. My AVM was last removed 8 years ago, it has not recurred since. A/P Anthony Penington
Laser Department
Royal Children’s Hospital
Parkville 3052
Ph: 9345 6441 (Mara) 9948 5005
Fax: 9345 6520


#4

Thanks for that. Can I ask what sort of treatment that you had?


#5

Hi Purdie,

I have an avm in my right temple and cheek. Had first embo last week so cant tell you long term experience. My doc seems to know his stuff though… based in Sydney:

http://www.sevs.com.au/about/dr-tim-harrington

I hope it works out for you mate.


#6

Thanks Ian, appreciate the information. Can I ask what you had done? Did they insert coils and what did they use?


#7

No probs. Had an embolisation, using glue. I don’t know specifics of type of glue.