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My sister was just diagnosed (Read 4056 times)
Doubletigers
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South San Francisco, USA, CA, California
Gender: female
My sister was just diagnosed
May 23rd, 2007 at 2:06pm
 
Hi,
My name is Fenti. My sister, 46 years old,  had a preliminary diagnosis of Moyamoya based on MRI scans last Thursday. She had the MRI at Stanford hospital. They sent the info to Dr. Steinberg the same day. She got a call today to see him tomorrow morning. I am going with her tomorrow. I am so glad that I found this site that gave me so much information that I need. Thank you so munch DJ for setting up this website.
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« Last Edit: May 23rd, 2007 at 4:19pm by Doubletigers »  

Fenti
 
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Lore
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My brother Kevin (Cubbie)
has Moyamoya

Posts: 819
Delaware, USA, usa, 419, 133, OH, Ohio
Gender: female
Re: My sister was just diagnosed
Reply #1 - May 23rd, 2007 at 4:07pm
 
Hi Fenti and welcome to the MM family!

I'm sorry to hear about your sister however she is in excellent hands with Dr. Steinberg.  He and his staff are the greatest.  My brother has MM and was treated by Dr. Steinberg in May of 2005 and is doing very well.

Keep us posted on your sister and ask any questions you might have.

Hugs,

Lore
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"What lies behind us and what lies before us are tiny matters compared to what lies within us." - Ralph Waldo Emerson
 
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joeblack357
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Posts: 24
Groton, USA, CT, Connecticut
Gender: male
Re: My sister was just diagnosed
Reply #2 - May 23rd, 2007 at 4:28pm
 
Fenti,
     Welcome to the Family, although I'm sorry you had to find us.  Great people here.  If we can help in anyway let us know.

Joe
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Skay
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Evansdale, USA, usa, 323, 119, IA, Iowa
Gender: female
Re: My sister was just diagnosed
Reply #3 - May 23rd, 2007 at 8:17pm
 
Hi Fenti,
     Welcome to the family. Sorry about your sister but as the others have told you your sister is in the best of hands with D. Steiberg. We are all here to help if you need it.
     Take care and godbless, Sharon
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hotdog  
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Doubletigers
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South San Francisco, USA, CA, California
Gender: female
Re: My sister was just diagnosed
Reply #4 - May 24th, 2007 at 11:00pm
 
We met Dr. Steinberg today and he confirmed that my sister has MM on both side. She will have her 1st surgery next month. She has some damage on her brain from the stroke. We also met Jill..Thanks Jill for talking to us.

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Fenti
 
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Carol Mae
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dx MM Mar 07

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Rockledge, USA, usa, 469, 278, FL, Florida
Gender: female
Tracy,Re: My sister was just diagnosed
Reply #5 - May 27th, 2007 at 6:24am
 
Dear Fenti,
   My name is Carol and I just flew home from Stanford the day you met with Dr. Steinberg. 
   I am 46 years old and was diagnosed with MM on Mar 19, and sent my test info to Dr. Steinberg the first week in April.  In less then a month I was scheduled for surgery.  I flew out on May 10 and had surgery on May 16.  I am only unilateral so only need it on one side. 
    Your sister is in GREAT hands with Dr. Steinberg.  Dr. Steinberg and his team are fantastic!  Since I hadn't had any major symptoms I was hesitant to proceed with surgery, but once I arrived at Stanford and had several tests completed, and had my consult with Dr. Steinberg I became confident that this was the absolute right thing to do for me.  Education and information always decrease uncertainty.
   During this whole procedure I was in email contact with someone who went through the surgery in Mar, and also with someone that is scheduled to have surgery in June, she will probably be there the same time as your sister. 
    I found exchanging information and having someone who just went throught the same thing to ask specific questions of on the tests, processes, and procedures that Dr. Steinberg and his team use was extremely helpful.  If you have an idea of what to expect then it doesn't tend to be so scary.  If you think something like that would help you and your sister just let me know.   You can email me directly;  spacelawyr@aol.com
    This web sight is great, and everyone here is helpful.  Just let us know if you have any questions and you are sure to get great answers. 
    My prayers and thoughts are with you and your sister,
Carol Mae

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Carol Mae
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lotsofkids
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Moyamoya...Oh boya boya!

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Akron, USA, usa, 421, 123, OH, Ohio
Gender: female
Re: My sister was just diagnosed
Reply #6 - Jun 4th, 2007 at 8:14pm
 
Hello Fenti,

You and your sister certainly did the MRI in the RIGHT hospital! You will be in good hands. I did my STA-MCA double bybass's with Dr Steinburg 8/06 and all went smooth as silk! Most enjoyable brain surgery I could ever ask for!

Glad you were in the right place....I had 5 yrs of MRI's without a dx....it took a pericarditis surgery to trigger a couple of mild strokes....before they actually discovered my MM.

Keep us posted....and please ask for any and all the support you might need.

WELCOME TO YOU.....CAROL MAE....
glad to see you are also doing well. A big welcome to YOUR new club...LOL!
Your advise of "Education and information always decrease uncertainty" is exactly what helped me pre-surgery. Hope to see more of you here on the board : )

smiles.....Diane
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Hmmm....seems I'm kinda "special" LOL
 
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LA
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Moyamoya survivor since
1999!

Posts: 334
Kneeland, USA, 15, 113, C
Gender: female
Re: My sister was just diagnosed
Reply #7 - Jun 5th, 2007 at 1:54pm
 
Fenti~

Hope everything goes well for yur sister.
I grew up in Palo Alto so that area (and Stanford hospital)  is my old stomping grounds!

That aside,  I had a stroke in 1999 (before this helpful information/support site) . After I became well enough to drive (live in Northern Calif now) my husband and I saw Steinberg, and Dr. Lawton in SF. Both agreed that I have mm. Had surgery with Steinberg in 2000, the year I turned 59. Most people cringe when they hit that age, but I was elated.

You're sister (and all of you) are hooked into a great group at Stanford and on the mm board --- is supportive and knowledgable.

I've met many wonderful people thru mm.

Love to you and your family,

Linda (LA)





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Linda (LA)
 
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LA
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Moyamoya survivor since
1999!

Posts: 334
Kneeland, USA, 15, 113, C
Gender: female
Re: My sister was just diagnosed
Reply #8 - Jun 5th, 2007 at 1:59pm
 
Whoops!

This is Linda.
I had my stroke before I was FIFTY (50)  --- not 59!
Still working to arrive at that  mature age.

Hope everything goes well for you.

La

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Linda (LA)
 
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