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A New Website for Moyamoya Disease Information (Read 5176 times)
KTiller
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A New Website for Moyamoya Disease Information
Jun 8th, 2009 at 3:57pm
 
Dr. Nadia Khan, a nuerosurgical fellow working with Dr. Steinberg at Stanford, has developed a website with up-to-date information about Moyamoya Disease. The url is Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register. She is still making additions to the site, but it is already darned good. Take a look. The two books she's written for young children who are facing revascularization surgery are delightful and informative. I tried the games for improving eye hand coordination after the surgery - I didn't do so well, but then I never could get the hang of video games. It was fun though!
Kim
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« Last Edit: Jun 8th, 2009 at 4:03pm by KTiller »  
 
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Little Luca
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Re: A New Website for Moyamoya Disease Information
Reply #1 - Jun 9th, 2009 at 4:47am
 
Thanks for the link Kim. I'm going over there to have look now.

Mark (Luca's Dad)
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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
11 years on now
Doing just great!
 
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Little Luca
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Re: A New Website for Moyamoya Disease Information
Reply #2 - Jun 9th, 2009 at 6:07am
 
OK, I'm back from moyamoya.net. It's a very good website and the game is a bit of fun. I will definately be trying to get my hands on the books, even though I am in deep, dark Africa.

Besides one technical issue I had with the website (pictures too small), my other issue was with the Dr's identity and credentials. If we are to take medical advise from moyamoya.net, then Dr Nadia Khan needs to give us details of his/her experience and credentials. This website, moyamoya.com, never claims to be a source of advice given by professionals, so we all take it for what it is, support and info.

Kim, are you sure Dr Khan works with Dr Steinberg? Why isn't Dr Steinberg listed as one of the moyamoya specialists? If you hadn't mentioned that he/she works with Dr Steinberg, I would have dedused this Dr isn't even in the USA.

I've suggested all this to Dr Khan.

Mark (Luca's Dad)

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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
11 years on now
Doing just great!
 
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KTiller
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Re: A New Website for Moyamoya Disease Information
Reply #3 - Jun 9th, 2009 at 6:41pm
 
Hi Mark,
I'm glad you passed your suggestions along to Nadia. She is a neurosurgical fellow who has been working with Dr. Steinberg at Stanford Medical Center for the past few years. Prior to that she had been practicing neurosurgery in Zurich, Switzerland. So you deduced correctly, she's not from the US, but her English definitely has an American accent.
In Zurich, she worked with another much respected Moyamoya expert from Japan. I'm sorry, I don't remember his name, but he trained with the Japanese fellow who first identified Moyamoya in 1956.
In Zurich they do a second bypass surgery called STA/ACA which brings more flow to the front part of the brain. She believes the brains of developing young children need this extra flow. She spoke about it at the Symposium on Saturday.
Nadia plans to return to Zurich and will be hosting the Second International Moyamoya Angiopathy Symposium there during the Fall of 2010.
I hope you're able to find the two books. They're beautifully done. Nadia felt so strongly that children need to understand  about the surgery and what to expect, that she created them using her own funds. She's a pretty terrific person.
Kim
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Danielle
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Re: A New Website for Moyamoya Disease Information
Reply #4 - Jun 9th, 2009 at 11:27pm
 
Kim, Thanks for sharing. The link was great. My daughter is 2 years old and was happy to see that there are some books out there. Danielle Smiley
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Christie
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Burnside IL
Re: A New Website for Moyamoya Disease Information
Reply #5 - Jun 10th, 2009 at 8:20am
 
Nadia is a pretty terrific person and Dr. I still tear up when i think of her. She was at my side when my daughter had her surgeries and took the time to sit and explain things to me. Things didnt go so well with my daughters surgeries and I was there at the hosp. by myself. I still think she was my angel! I don't know how i would have gotten through it without her. She is very compassionate.
                            Christie
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1st stroke april 2008
1st surgery Nov. 5
2nd surgery Nov. 18
Still recovering from strokes
 
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Little Luca
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Re: A New Website for Moyamoya Disease Information
Reply #6 - Jun 10th, 2009 at 9:34am
 
Wow, clearly Dr Khan has all the necessary experience and credentials. Thanks Kim and Christie for putting my cynicism/skeptism to bed, it really is my bugbear.

Mark (Luca's Dad)
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« Last Edit: Jun 29th, 2009 at 7:54am 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
11 years on now
Doing just great!
 
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gotchlorine
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Re: A New Website for Moyamoya Disease Information
Reply #7 - Jun 10th, 2009 at 10:20am
 
Mark,

You have every reason and right to ask what you asked, and I think it's important that you shared your thoughts with Dr. Khan. I'm sure your comments will be very appreciated by her.

Adding my two cents to what Kim and Christie said about her, she's an absolutely amazing doctor and person. Those of us in the moyamoya world are fortunate to have her on our side, and I think we'll see some incredible things from her in the future.

By the way, I love seeing your "Luca updates"! They bring many smiles to my days, and I find myself looking forward to seeing what you've written about her. What a little trooper she is, and she's certainly blessed to have you as her father.

Warmly,
Jill
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Michele
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Re: A New Website for Moyamoya Disease Information
Reply #8 - Jun 26th, 2009 at 5:47pm
 
http://moyamoya.stanford.edu/morningsession2/
http://moyamoya.stanford.edu/morningsession1/

I am not done watching the presentations yet, will post the links as I watch them!   Wink
VERY interesting to see how MM is treated in different countries as well as with different populations (adult vs. child) within our own country somewhat depending on where treatment is sought!

Michele
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Mar
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Re: A New Website for Moyamoya Disease Information
Reply #9 - Jun 26th, 2009 at 6:37pm
 
OMG, this is OUTSTANDING!!!!! AMAZING information. THANK YOU so much for posting it!!!!!

I think your links should be posted in a special thread, so people will have better access to it. It's unbelievable how far moyamoya research has come since I've been here. I've never seen anything like it.

Thank you again for sharing it!!!!

Mar
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LA
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Kneeland, USA, 15, 113, C
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Re: A New Website for Moyamoya Disease Information
Reply #10 - Jun 27th, 2009 at 12:55pm
 
Hello~

Just a note on the incredible Stanford reunion and the Moyamoya symposium. A ditto on what has already been said here.

Being with people who share life with mm, have experienced the search for answers and help, the knowledge of being in such a small 'club', the notion of helping others now, was such a gift. Dr. Steinberg, Nadia, Teresa, Jill and many of the Stanford folks were there. Was a tremendous feeling of camaraderie for Jack and I.

We were able to attend the afternoon sessions of the symposium. Nadia played a large part in making it happen ~ along with Dr. Steinberg.  Hearing the world experts discuss this various aspects of moyamoya from management to research, surgical methods to patient care and awareness was beyond incredible. Having lived with mm for the past ten years, seeing these committed efforts being made was heart (and brain!) warming.

Just had to toss in my appreciation and care for all of us mm folks and for the world wide efforts on our behalf.

Linda (LA)


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Linda (LA)
 
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dinferois
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Re: A New Website for Moyamoya Disease Information
Reply #11 - Jun 30th, 2020 at 5:04pm
 
sides one technical issue I had with the website (pictures too small), my other issue was with the Dr's identity and credentials. If we are to take medical advise from moyamoya.net, then Dr Nadia Khan needs to give us details of his/her experience and credentials.
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dinferois
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Re: A New Website for Moyamoya Disease Information
Reply #12 - Jul 2nd, 2020 at 6:47pm
 
I believe the site is using poor hosting.
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