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Nic

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Posts: 7
Wellingon, New_Zealand, australia, 519, 324
Gender: female

Not the only one...
Jan 10^th, 2007 at 5:47am

Hello all

For 3 years I've resisted looking for information on the internet, because so much of it is erroneous.

I haven't yet been diagnosed with MM, but the neurosurgeons and neurologist think it's highly likely, judging from the haemorrhage I had 3 years ago and the fact that the major blood vessels in my brain are all narrowing. I've had radiosurgery to fix the first bleed, but I've only just been told what to expect in the future.

It's very frustrating, as the neuros here have never seen an adult case before (New Zealand is very small, we have a population of 4.5 million people) so they're not giving me a definitive answer.

Thanks for the site (:

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moyamoi

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Re: Not the only one...
Reply #1 - Jan 10^th, 2007 at 5:49pm

Hi and welcome Kiwi Nic!!
I am across the water from you. In Perth Western Australia to be exact!! Sorry that have recently undergone such drama, but if you need your doctor to find out more I am sure that my neurosurgeon would only be too happy to fill him in as he does have MM experience and is a brilliant surgeon. Please send me a message if you would like to talk or want some further information on my experience (I have had 2 STA-MCA's)
; Grin

Moira

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Nic New Poster Offline Posts: 7 Wellingon, New_Zealand, australia, 519, 324 Gender:	Re: Not the only one... Reply #2 - Feb 15^th, 2007 at 8:08pm It's official. I've been diagnosed with MM. Going for my first SPECT scan soon...
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Emily Senior Poster Offline Diagnosed Oct 2005. Direct bypasses: Nov 05 Apr 06 Posts: 259 Brisbane, Australia Gender:	Re: Not the only one... Reply #3 - Feb 15^th, 2007 at 8:27pm did you have an angiogram?
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Nic New Poster Offline Posts: 7 Wellingon, New_Zealand, australia, 519, 324 Gender:	Re: Not the only one... Reply #4 - Feb 16^th, 2007 at 5:01am I've had 3 angiograms. I've just been referred to a neurologist who has definitively said I have Moya moya.
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ntrlpwr

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have faith, the Lord is
my savior dx 2006

Posts: 62
Pearl City, USA, usa, HI, Hawaii
Gender: female

Re: Not the only one...
Reply #5 - Feb 16^th, 2007 at 6:03pm

whew a spect scan, hehe, it was hard enough for me lie down and to boot be very very quite. i'm just not that kind of person, hehe, i'm alomst ADD and to keep me quite and just relax is sometimes hard. anyway it's a very simple test just that you have to be quite and just rest forever before they even scan you, well at least for me i had to.

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aloha,&&Brandie

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patch

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Posts: 51
NEWCASTLE, Australia, australia, 325, 238, NSW, New_South_Wales
Gender: female

Re: Not the only one...
Reply #6 - Feb 27^th, 2007 at 5:06pm

Hi Nic

Welcome to the best support network you could ask for.

If you are looking for a neurosurgeon who has had experience with MM - remember Australia is not far.

I had ops on both sides in Sydney in Nov 2005 - I know Emma & Emily had theirs in Melbourne and Moira in Perth.

Will provide any info you want.

Thought & prayers with you

Helene

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Nic

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Posts: 7
Wellingon, New_Zealand, australia, 519, 324
Gender: female

Re: Not the only one...
Reply #7 - Mar 25^th, 2007 at 6:47pm

Hey there Helene

Thanks for the offer. I think I need to start looking on the other side of the ditch for a second opinion. There aren't any private neurologists or surgeons here and the process of diagnosis is very very slow. Both neurosurgeons I've seen don't really know anything about Moya moya and the neurologist is baffled.

My new neurosurgeon has basically shunted me over to the neurologist because he doesn't know what to do with me. Which doesn't fill me with a lot of confidence. The neurologist is very good, and ordered a SPECT scan for me, but obviously he isn't a surgeon.

I'm trying to get a copy of all my films and notes now. If you can give me some names/emails of surgeons in Australia, that would be very helpful.

Thank you
Nic

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Emily

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Diagnosed Oct 2005. Direct
bypasses: Nov 05 Apr
06

Posts: 259
Brisbane, Australia
Gender: female

Re: Not the only one...
Reply #8 - Mar 27^th, 2007 at 8:18am

hi there... yeah i (and emma) had my surgeries done in melbourne, australia.. my surgeon was mr john laidlaw and he has about 10 yrs of experience in moyamoya, around the world... i have complete confidence in him (unlike the neuro-s i just met in brisbane who is now taking over my case.. hmmmm)

anyway feel free to send me an email at emilyjones82@yahoo.com.au if you want to discuss any details or ask any questions.. my general knowledge on the condition is pretty good.

emily

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moyamoi Ex Member	Re: Not the only one... Reply #9 - Mar 28^th, 2007 at 1:09am Hey Nic, My Neurosurgeon is Emil Popovic and he operates out of the Mount Hospital in Perth (5 Star hospital and brilliant surgeon!!) Moira
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patch Junior Poster Offline Posts: 51 NEWCASTLE, Australia, australia, 325, 238, NSW, New_South_Wales Gender:	Re: Not the only one... Reply #10 - Apr 13^th, 2007 at 7:41am Hi Nic Sorry for the delay - I have not been on board for a couple of weeks. My surgeon is Prof. Michael Morgan from Macquarie Neurosurgery in Sydney - he operates at Dalcross Private Hospital. Happy for you to email me rabbittht@yahoo.com.au Helene
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