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Wife has just been diagnosed in Australia (Read 6632 times)
Geoff and Tanya
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Wife has just been diagnosed in Australia
Feb 7th, 2012 at 11:30pm
 
G'day all from Australia.
Wow what a crazy few weeks since my wife started tests for head aches.
She has now been diagnosed with MoyaMoya disease, your dead right before we were given your site we were devastated as many doctors here in Aus had no idea what Moya Moya was and all we could find on the web made us feel we were fighting a loosing battle. Its great to hear all the success stories give us hope once again. Our Neurologist has referred us to Dr Asshadd from Macquarie University, first appointment on this Monday 15th February. Have you heard any thing about this surgeon? It would be great to hear from anyone in Australia or else where as a partner it is frightening so i can only support and imagine how people diagnosed with this disease are felling.
We would love to hear from anyone in Australia especially.
Cheers
Geoff
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« Last Edit: Feb 10th, 2012 at 5:35pm by Geoff and Tanya »  
 
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maryanne
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Re: Wife has just been diagnosed in Australia
Reply #1 - Feb 18th, 2012 at 6:10am
 
Hi Geoff and Tanya
I am in Melbourne and on waiting list now to have first surgery done with Mr Laidlaw at Royal Melbourne Hospital. I have copied this info from surgeons with bypass experience area for you. Prof Marcus Stoodley, who operates at Prince of Wales Public, Private and Dalcross Pricate Hospital (all in Sydney). All I can say is do your research on your doctor and be as informed as you can be. This site is a wealth of information and made my husband and I confident we are on the right path.
Maryanne Smiley
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Geoff and Tanya
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Re: Wife has just been diagnosed in Australia
Reply #2 - Mar 1st, 2012 at 5:42am
 
hi Marryanne
yes we would be lost without this site.
Dr Assadd has now referred us to Proffessor Stoodly who has done some training with Dr Stienburg at stanford thats comforting.
I have also been in contact with Dr stienburg who is happy to review Tanya's case so i guess i will speak to him about Prof Stoodley then.
So how long since u were diagnosed with MMD and how long have u been waiting for ur surgery?
We seem to be getting things done fairly quickly here in sydney.
Had the 1st stage spect test today back on the 7th for the second one the to Prof Stoodley to get the final verdict.
hey nice to talk to someone with the same stress let me know if u want my email addy ok
cheers
Geoff and Tanya
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maryanne
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Re: Wife has just been diagnosed in Australia
Reply #3 - Mar 3rd, 2012 at 3:04am
 
Hi Geoff and Tanya
I have sent you a personal message with my email details and will keep in touch.
Maryanne
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Emily
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Re: Wife has just been diagnosed in Australia
Reply #4 - Apr 23rd, 2012 at 7:48am
 
Hey guys,
I'm an Aussie too and there aren't too many of us here with MM!
I live in Brisbane now but I was diagnosed and had my surgeries in Melbourne with Mr John Laidlaw, who Maryanne is seeing.
I was diagnosed in 2005 and had direct bypasses (STA-MCA) in 2005 and 2006. I am now a nurse in a neurosurgical ward and my MM knowledge is pretty up there. I will send you a message with my email address and feel free to ask any questions you may have.
I know Dr Charlie Theo is in Sydney and he is considered the top vascular surgeon in the country and he definitely has MM experience, he operated on a small boy I know from QLD. He'd definitely be worth looking into.
I'll message you now, keep us posted!
Emily
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hrsridermom
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Re: Wife has just been diagnosed in Australia
Reply #5 - Apr 25th, 2012 at 3:04pm
 
My daughter's surgeon is from Perth.  He is leaving the hospital here in Florida and moving back to Australia.  Not wure if he's going home to Perth or not (that's my assumption though)  He is absolutely amazing.  He knows Dr. Steinberg (I've heard he almost went to work with him).  When I find out where he's going I will let you know.  And as a bonus...he didn't shave my daughter's head! Smiley
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Destin's mom
 
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Geoff and Tanya
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Re: Wife has just been diagnosed in Australia
Reply #6 - May 8th, 2012 at 5:28pm
 
Well today is the day. off to Royal North Shore Hospital for surgery tommorrow. we have never been so nrrvous. i think Tanya is so much braver then me she is so srong. this site has been so good. will keep you all upto date. thanks to all for ur support. chat doon.
Vheers Geoff and Tanya
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pritzlm
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Re: Wife has just been diagnosed in Australia
Reply #7 - May 8th, 2012 at 10:45pm
 
Good luck!  We'll keep your family in our prayers!
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