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Moyamoya.com Forum › Moyamoya Related Topics › Moyamoya Related Information and Support › 5 yrs Asian-American girl with MM plz help

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5 yrs Asian-American girl with MM plz help (Read 3872 times)

smilesunnie

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mom of 6 yrs old MM child
(2007)

Posts: 30
USA, usa, CA, California
Gender: female

5 yrs Asian-American girl with MM plz help
Jul 18^th, 2007 at 9:21pm

[color=Green][/color]This is Alice's mother. She is 5 yrs old Korean American and had 1st right surgery in 6/28/07. We are trying to contact special doctor for Moyamoya disease. We are staying in Korea because of 1st surgery. And gathering all information before we leave Korea. The schedule for 2nd surgery is 8/7/07 in Korea and we decided that if we could find the hospital who is well known of MOYAMOYA then we would like to do in our hometown, Fullerton, CA.

1) What documents do you need for precedure?
2) medical insurance

I read the some of you already had experience with precedures. What way we could do this precedure fast?

Here is Alice's medical information:
1) 1st diagonis with 10/2006 , when she had stressed out, she told me she can't raise her own hand like no power //hand and leg. Like exhausted.
2) In 1/2007, 1st seizure, Alice/// We went to family doctor. It took 5 months to get the test done ( CT scann, EEG, MRI) unbelievable !!
3) in 6/22/07 came to Korea because of delay on every precedure in USA and found out about MOYAMOYA, 6/28/07 1st surgery (EDAS).

Please help us
... Thank you very much.

« Last Edit: Jul 28^th, 2007 at 9:45pm by smilesunnie »

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lotsofkids

MM.com Benefactor

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Moyamoya...Oh boya boya!

Posts: 333
Akron, USA, usa, 421, 123, OH, Ohio
Gender: female

Re: 5 yrs Asian-American girl with MM plz help
Reply #1 - Jul 19^th, 2007 at 7:59am

Dear Alice....the two leading authorities in the USA are by far, Dr. Steinburg of Stanford University (california) and Dr. Scott of Children's Hospital of Boston (massachusetts)

Dr. Scott primarily does children and the EDAS procedure, Dr Steinburg does both children and adults and both sta-mca and the edas surgery.

There are many other doctors that are quite capable, but none have the overwhelming experience of these two doctors. And that is what I would want behind my daughter. (and myself...I went to Dr. Steinburg for my dble sta-mca 8/06)

I do hope your sweet little girl will have a bright future, now that she is diagnosed and having treatment.....it should all get better from here!

My best wishes to you and your family. Keep us posted. I'd love to hear positive news about her : )

Diane

If you have had MRI's, MRA'S and hopefully a brain Angiogram, then you may overnight copies of your films to either or both of the above doctors....they are VERY fast....you should have a reply almost immediately that your films were read and a treatment reccommended.

As far as Insurance goes.....if you have insurance...then they would also help you in getting the neccessary approvals through quickly.

If you do not have insurance, then they probably have a program for assistance set up at the hospital, which you would need to look into and apply for.

Do contact them....you will find the contact information right here under the "links" tab. Speak with them and send whatever you have as far as records and films....and get started! You should not have a difficult time as you did waiting 5 months for things to move before....now you will see the system when it WORKS!

I hope this has been some help.

diane : )

« Last Edit: Jul 19^th, 2007 at 8:13am by lotsofkids »

Hmmm....seems I'm kinda "special" LOL

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pasnblu

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Diagnosed April 19, 2007

Posts: 112
Fernandina Beach,Florida 32034
Gender: female

Re: 5 yrs Asian-American with
Reply #2 - Jul 21^st, 2007 at 1:45pm

Hi Sunnie Smile:

You need to get Alice up here. Stanford is right in your backyard. And I am in Mission Viejo andwork in Anaheim. I would be happy to meet with you and answer any questions. I am sure there is financial support available and Stanford is so much closer to Korea. Feel free to write me at pasnblu@hotmail.com.

Best of luck to you and Alice. I will be praying for you!
Sandi

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smilesunnie

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mom of 6 yrs old MM child
(2007)

Posts: 30
USA, usa, CA, California
Gender: female

Re: 5 yrs Asian-American girl with MM plz help
Reply #3 - Jul 28^th, 2007 at 10:00pm

[color=Green][/color]
[smiley=huh.gif]
Thank you for your support everybody in MM families. We are processing of contacting Dr. Steinberg staff. Dr. he is out of country and coming back first week of August. We sent all related doc. to staff. And they are doing their best to support Alice. Thanks GOD. :-*

Those who travel to San Jose by air plane how soon did you fly back to your home after surgery? The reason is my daughter had 1 st in 6/28/07 and traveling from Korea to USA takes about 11 hours airplane. Just past 1 month when Alice did the 1 st surgery (EDAS), she had 2 TIAs and other than that she is doing recovering real well.

When did others fly with airplane after surgery? The 11 hours fly time, current, and stress are making us worry after worry.. I understand the doctors do not want to take responsible. plz any comments are welcome.

God bless you.

Sunnie

« Last Edit: Jul 29^th, 2007 at 7:42am by smilesunnie »

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smilesunnie

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mom of 6 yrs old MM child
(2007)

Posts: 30
USA, usa, CA, California
Gender: female

Re: 5 yrs Asian-American girl with MM plz help
Reply #4 - Aug 7^th, 2007 at 3:39am

We finally came back from Korea. She was fine in the airplane . Thank God. We are leaving tomorrow from Los Angeles to San Jose. First, we have appointment with family doc at Palo Alto medical clinic. If Dr. Jasmin refer fast to Dr. Steinberg, we can see Dr. Steinberg in 8/13/07. And Other exams are schdule to 8/20/07 and 8/27/07. I havent' decide we will stay there or come back and go again...

Anybody MoyaMoya family in Stanford , I can't wait to meet them there. please email me...tks

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srkm5482 MM.com Sponsor Offline I love YaBB 1G - SP1! Posts: 123 Sugar Land, TX Gender:	Re: 5 yrs Asian-American girl with MM plz help Reply #5 - Aug 9^th, 2007 at 10:34pm Sunnie, Am so glad to read that you made it home safely and will be conferring with Dr. Steinberg. From what I've read here, he is truly awesome! Best wishes to you and Alice - keep us posted on her progress! Sue
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smilesunnie

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mom of 6 yrs old MM child
(2007)

Posts: 30
USA, usa, CA, California
Gender: female

Re: 5 yrs Asian-American girl with MM plz help
Reply #6 - Aug 18^th, 2007 at 2:52pm

Hello everybody,

Thanks all for your pray. We met Dr. Steinberg and did MRI/MRA. I couldn't believe when I met Dr. Steinberg and shaked my hand with him. He is awesome as everybody described him. Alice will be doing angiogram on 27th SPEC and following days. And tentatively her 2nd surgery will be her 6th birthdate 9/11/07. Yes, her birthdate was 9/11/01. We asked if we could move little earlier ... however, it all upto them. I don't want to bother them so much...( you know what I mean).. Alice is loosing her weight. She lost her appetite. As we all know we can't push up to eat ... Anyway we will keep try to feed with nutritious food. I meant that's all we could do before surgery. Thank you all again.. and pray for her.

« Last Edit: Aug 18^th, 2007 at 2:52pm by smilesunnie »

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