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Surgery in NZ (renamed post) (Read 9289 times)
Kiminz
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Surgery in NZ (renamed post)
Dec 15th, 2011 at 4:18am
 
Good evening MM community.  I have be devouring every thread and sating my newfound hunger for information.  Many of my questions, thankfully have been answered or at least placated somewhat by what I have read on this site.  But as is the way, there are always more questions.

A little about me. My name is Kim, f, 34yo married mum of 5yo and 1yo living in Wellington, New Zealand.  I was only just diagnosed this week by Dr Kong Chung at Wellington Hospital.  I have been having TIAs on and off for a few years and only recently experienced more intense and longer lasting 'episodes' resulting in a call, one night, to the ambulance (numbness, slurring, nauseous, dizzy, blindness and a blood pressure of 200/140)

My dad only died 21 Nov of an intracranial haemorrhage due to an aneurysm rupture (he wasn't diagnosed with moyamoya).  So it made me actually see someone about my TIA 'issues'.  In the process of trying to find as much info as possible I came across this site.  Thank you DJ and everyone here who has contributed to this site.

I'm at the stage of getting tests done to see if there is any reason why 'not' to get an operation.  My doctor says that mm ops are not available in NZ and suggested to go to Stanford.  I have since found via this site that there is a Dr in Auckland which I have been attempting to make contact with.  I don't see Dr Chung till February now, when he will organise an angiogram for me and begin making phone calls.

(edit: renamed post to be easier to reference)
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« Last Edit: Oct 31st, 2012 at 8:53pm by Kiminz »  
 
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DJ
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Re: Next patient
Reply #1 - Dec 15th, 2011 at 7:28am
 
Hi Kim,

I'm sorry you had to find us but I'm glad we could be here for you!

Sorry to hear about your father.  I hope you can get your testing done soon and can get in touch with Dr. Law to see about treatment.

If there are any questions we can answer for you please don't hesitate to ask!

Let us know how it goes...

DJ

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Adversity does not build character... it reveals it...  I help my neighbor and my neighbor helps someone else. Life is a wonderful circle!
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Becky
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Unilateral Surgery9/04

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Re: Next patient
Reply #2 - Dec 15th, 2011 at 7:48am
 
Kim,
Welcome to the Family. I am sorry to hear about your father too. I am happy to see your on your way to getting the correct treatment, and I hope things go smooth for your journey. Please feel free to ask any questions. Please keep us posted on your progress.
Stay strong,
Becky
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What doesn't kill us, makes us stronger. And sometimes leaves a cool looking scar.     STA-MCA bypass and EMS Surgeries done at same time at the Mayo clinic
 
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Kiminz
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Re: Next patient
Reply #3 - Dec 15th, 2011 at 4:21pm
 
Thank you so much Becky & DJ.  Now that you ask about questions...

My doctor says that Stanford was the best hospital in the 'western' world.  Is there any info on places that specialises in moyamoya in the non-western world? (I've always wanted to see Japan and Korea has an amazing cybersports culture)

I have no health insurance, so I am wondering about how much I could be looking at.  Issue being of course I wouldn't know what kind of op I would need.. or whether both sides would need to be done. The same issue with how long would I need to plan for.  I would need to plan for travel, accommodation (for my support) and length of time needed for apt recovery and follow up. 
And incase anyone knows off hand.. would I need a visitors visa?
Thanks
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Becky
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Re: Next patient
Reply #4 - Dec 16th, 2011 at 10:05am
 
Kiminz,
Sorry I can help you with the global doctor but you may look in "Surgeons with Bypass Experience".

As far as recovery and length of stay depends on the surgery(s), your age, your own biological recovery (ie how long does it take for you to get over the flu), etc. All I can give you is my personal recovery time from a left hemisphere STA-MCA and EMS, both were done at the same time: 1 day in critical ICU then 3 more days in normal ICU then Home and bed rest for about 2 weeks then I went back to a 40 hour work week. Every persons recovery is different so what worked for me may not work for you.
Please keep us posted.
Becky
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« Last Edit: Dec 16th, 2011 at 10:05am by Becky »  

What doesn't kill us, makes us stronger. And sometimes leaves a cool looking scar.     STA-MCA bypass and EMS Surgeries done at same time at the Mayo clinic
 
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Kiminz
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Re: Next patient
Reply #5 - Jan 9th, 2012 at 6:35am
 
Since last I posted I have been having a lovely Christmas and new years with family. I've had to do a range of blood tests to see whether there is any reasons why 'not' to do any ops.  (Iron studies due to my low iron, glucose test cant remember the others)
I also obtained my fathers CT and angiogram records from the hospital.  I will show my doctor these scans and ask him to confirm whether dad had moyamoya as well.

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« Last Edit: Jun 23rd, 2012 at 11:26pm by Kiminz »  
 
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Kiminz
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Re: Next patient
Reply #6 - Mar 18th, 2012 at 7:03pm
 
Update time:
My neurologist from Wellington hospital has sent an email to the Doctors at Stanford (finally) and we are waiting on word from them.  My angiogram did not show my nerologist what he wanted as he said that when the contrast was injected it gets to the top of my carotid arteries and then gets 'lost' due to the 'new' vessels. 
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« Last Edit: Jun 23rd, 2012 at 11:25pm by Kiminz »  
 
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Kiminz
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Re: Next patient
Reply #7 - Mar 27th, 2012 at 10:00pm
 
We recieved a mail back from Dr Steinberg today basically confirming I have bilateral moyamoya disease which is worse on the right hand side. He has recommended revascularization of the right hemisphere and monitoring the left annually for progression. 

What I found fascinating was that they said my scans show 'Watershed Ischemia' (which i googled) and it just explained so much but made it seem all the more important to get the op.

My neurologist will be getting back in touch about costing etc.  But knowing that I only need the one op does make things seem a little bit better then before.
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Kiminz
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Re: Next patient
Reply #8 - Jun 23rd, 2012 at 11:37pm
 
Since my last update I have found out that there is a special fund run by the Ministry of Health for High Cost Surgeries for if the surgery can't be offered in NZ.  Unfortunately the Neuro-surgeons in NZ won't commit to saying that it 'can't ' be offered anymore. The surgeon I spoke to said that he had done the op before, 6 times in the last 10 years.  I am looking at going to have the op in Melbourne and self fund it.  I have had an appointment with Mr John Laidlaw at the Royal Melbourne Hospital and hopefully the surgery will go ahead before September.  Co-chairing my surgery would hopefully be Ales Aliashkevich who is there getting experience in this kind of surgery. He is based at Wellington Hospital so I may be able to get follow ups done locally with him on his return.
I hope this info helps someone.
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Little Luca
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Re: Next patient
Reply #9 - Aug 1st, 2012 at 6:39am
 
Hi Kim

I realise I'm coming in late here but perhaps this is useful.

I've heard good things about Prof. Stoodley in Sydney, there are a few members on here who have been operated on by him and I'm sure you'll find his details on the appropriate board.

When we were looking for surgeons for Luca the cost of going 'Western' was prohibitive for us too so I looked 'East' also.

I got an incredible email from a member on this board detailing her surgery experience at a Japanese moyamoya clinic run by a Dr Touho. I'm quite sure I've seen his details on the 'Surgeons with Experience' board also.

Let me know if you want more detail.

Take care
Mark (Luca's Dad)
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« Last Edit: Aug 1st, 2012 at 6:40am by Little Luca »  

1st stroke in September 2008, age 10 months
Bi-lateral mm diagnosis
2nd stroke in November 2008, age 1 year old
Left side surgery in December 2008
13 years on now
Doing just great!
 
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Kiminz
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Re: Surgery in NZ (renamed post)
Reply #10 - Oct 31st, 2012 at 9:07pm
 
Thanks Mark, I hope Luca is healthy and well.  I won't need the info at this stage as I am scheduled for a STA-MCA bypass next week here in Wellington.

I went to meet Mr John Laidlaw from Royal Melbourne Hospital and head of the neurosurgery in July 2012.  Fortunately for me Ales Aliashkevich was there gaining experience in 'my' kind of operation and was actually based in Wellington and was due to return in September 2012.

On his return to Wellington he contacted me and has booked me in on 7 November 2012. 

I am not one to question fate and I am so very thankful that after all the research, travelling and consultations I am able to have my operation in my own home town only minutes away from my family & friends.  I am humbled in the fact that many do not have that luxury.

I do hope that my next update will be from my recovery bed
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« Last Edit: Oct 31st, 2012 at 9:08pm by Kiminz »  
 
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