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moyamoya treatment in nz and australia (Read 7989 times)
kiwiana
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moyamoya treatment in nz and australia
Nov 23rd, 2010 at 5:02am
 
Hi

We are in New Zealand and our 13-year-old daughter has recently been diagnosed with moyamoya. Does anyone have any advice or information on surgical treatment options in NZ or Australia? Would surgeons in this part of the world have adequate experience in treating this? Thanks.
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yunnanababy
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My daughter had her surgeries
in October 2009

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Re: moyamoya treatment in nz and australia
Reply #1 - Nov 23rd, 2010 at 1:26pm
 
Hi Kiwiana,

Welcome to the group.  I'm sorry that you have to be here, but you will find great support & knowledge from your fellow members.

Following is an excerpt of a message posted by group member Mar on 10/25/10 regarding a physician in Australia who has MM experience:

     ..."I can't say whether Prof Marcus Stoodley, in Sydney Australia, is a MM specialist or not, but many MM members here from Australia, have spoken very highly of him concerning his MM knowledge and experience and said he really knows his stuff....

In case you haven't seen the thread about him in the Surgeons with Bypass Experiencesection, here it is:
http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1181213093 "

Best wishes to you & your son,

Jennifer
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Mom to an 9.5 y/o ballerina/guitar player with MMD & an 11.5 y/o gymnast/cross country runner/swimmer!
www.caringbridge.org/visit/rubymaejingli
WWW 1422039771&ref=profile  
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dmm
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Re: moyamoya treatment in nz and australia
Reply #2 - Nov 23rd, 2010 at 4:19pm
 
My daughter (18) had Mr John Laidlaw do her STA-MCA bypass at Royal Melbourne Hospital and he was great. I have been told Mr Andrew Danks of Monash Medical Centre - Melbourne is good too.
There are a few other families on this site from Melbourne and have younger children, maybe you could check past posts and contact them. Hope this helps. Good luck.
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LeonieC
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Re: moyamoya treatment in nz and australia
Reply #3 - Nov 23rd, 2010 at 5:58pm
 
Hi Kiwiana, my daughter is currently looked after by Dr Andrew Danks, who was a neurosurgeon in Monash Medical Center Melbourne . If you are interested in, you could send me private message and I'll get back you as soon as I could.
Good luck.
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kiwiana
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Re: moyamoya treatment in nz and australia
Reply #4 - Nov 25th, 2010 at 4:45am
 
Thanks, everyone, this is very helpful. We will follow up on the Australia leads. But, as we are based in NZ, we would also like to hear from anyone who has received treatment in NZ.
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trudy
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Re: moyamoya treatment in nz and australia
Reply #5 - Nov 25th, 2010 at 9:53pm
 
Have just come across your entry in the Moyamoya guest book. I am a New Zealander who has Moyamoya disease.

We have a very talented Neurosurgeon here in Auckland who has a dozen or so people with Moyamoya disease under his care.


andrew.law@neurosurgeon.co.nz

www.neurosurgeon.co.nz

Ph 09 5207824

Kind Regards

Trudy Lawton


granttrudy@xtra.co.nz
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kiwiana
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Re: moyamoya treatment in nz and australia
Reply #6 - Nov 27th, 2010 at 5:26am
 
Thanks a lot for your reply, Trudy. We will be meeting Andrew Law soon. We are concerned that you had to wait for over a year for your surgery. Do you know whether that is the normal wait?
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trudy
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Re: moyamoya treatment in nz and australia
Reply #7 - Nov 28th, 2010 at 2:01am
 
Glad to hear from you Kiwiana,
Andrew Law knows this disease inside out, and he assesses each case on it's merits. In my case Andrew believed from my MRI/A that I did not need surgery. He said he would monitor me every two years. About 7 months after that visit I was aware things were not completely right. I contacted Andrew and a subsequent MRI/A showed I needed surgery.
I have visited Andrew in February of this year and he tells me that MMD is becoming more prevalent in NZ. He had performed 5 MMD surgeries already in 2010.
Please feel free to email me,
Regards Trudy
granttrudy@xtra.co.nz
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kiwiana
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Re: moyamoya treatment in nz and australia
Reply #8 - Nov 28th, 2010 at 4:31am
 
Thanks a lot for this, Trudy.
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KT
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Re: moyamoya treatment in nz and australia
Reply #9 - Dec 2nd, 2010 at 3:26am
 
Hi Kiwiana,
We are in Auckland, my 12 yr old son was diagnosed with moyamoya last year. We are under the care of Andrew Law and have found him very good. We also see a neurosurgeon in Sydney, as we spend a bit of time there. His name is Mark Dexter and he is also very familiar with moyamoya.
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