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  Moyamoya.com Forum › Moyamoya Related Topics › Moyamoya Related Information and Support › Let me Introduce Myself....
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Let me Introduce Myself.... (Read 4702 times)
SandyR
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I had it all together.but
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Let me Introduce Myself....
Apr 25th, 2011 at 4:18pm  
Hi Everyone  I am SandyR.  58 years  and I ve been told I have MoyaMoya.   Never had any symptoms  except Restless leg syndrome which is really irritating.  Finally I had a stoke on Mar 17 2011 which was my R leg feeling lazy for about 4 hours and then 2 days later I couldnt remember my dogs name and started talking strange.  My husband thought I had a stroke so he took me to the hospital ..He was right. 
   I really do not know what to do.The Neurosurgeon thinks I am too much a risk to do any surgery.  I have severe chronic asthma  and am using oxygen by nasal cannula 24/7.    Embarrassed   and before the end of our appointment he sad in a low voice  "But you will have another stroke in a year." Thanks alot!!  So they are hoping Plavix and Crestor and Apirin will be ok for me as treatment.  This is from Northwestern Hospital in Chicago Il.
   By the way I am German and North American Indian...not Asian. Go Figure!!!
    I need to know where I can go for a second opinion and a Drs Name. I am a RN also, I want  top guys.
I ve seen Stanford noted here.  I guess Ill eed to make appointments soon...My daughter found this site ....Thank Goodness!    Sandy Russell
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mg12061
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Albany, USA, usa, 492, 84, NY, New_York
Gender: female
Re: Let me Introduce Myself....
Reply #1 - May 1st, 2011 at 8:01am  
Sandy, Sorry I'm just seeing this post. If you post on the moyamoya information page you may get more responses. But I am glad you found this site.  I think everyone here would reccommend that you get a second opinion. I would not settle for being told to just wait for the next stroke. Sending copies of your scans to Dr. Steinburgh in cal. for review is the best thing you could do for yourself right now. Please don't accept one Dr.'s opinion on this consult with a moyamoya expert. You can find Dr. Steinburghs information on this site.Keep us posted.
Mary Grace
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saboliz
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I Love MM.com!

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Re: Let me Introduce Myself....
Reply #2 - May 1st, 2011 at 11:38pm  
If you don't want to go to California, you can see Dr. Zuccarello, MD in Cincinnati, OH. at the Mayfield Clinic.

http://www.mayfieldclinic.com/PE-Moyamoya.htm

I wouldn't wait either. I just had my surgery in Cincinnati on March 24, 2011.

Good luck, if you need anything else. Please let us know.

Liz
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Becky
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Stroke10/03, Diagnosed6/04,
Unilateral Surgery9/04

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Minneapolis, USA, usa, 303, 84, MN, Minnesota
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Re: Let me Introduce Myself....
Reply #3 - May 2nd, 2011 at 9:20am  
SandyR,
Welcome to the family. I am not Asian also, I am a redheaded 1/3 dutch and rest European mutt. I got my second opinion from Dr. Meyer at the MN Mayo Clinic. 
Contact Info: Secretary 507-284-5317
                     Nurse       507-284-2820
                     His Voice mail 507-284-2511
                     Fax           507-284-5206

Dr. Meyer's Office Address
200 First street SW
Rochester, Minnesota 55905

I would definitely get a second opinion especially if they are saying you may have another stroke with in a year!! Do not wait and See.

Please keep us posted,
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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pritzlm
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I Love MM.com! Mom to
Darien and 4 others

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Re: Let me Introduce Myself....
Reply #4 - May 2nd, 2011 at 3:54pm  
We are having surgery for our son at Froedert in Milwaukee.  They are experienced with MM and have treated us really well.
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Skay5709
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Re: Let me Introduce Myself....
Reply #5 - May 2nd, 2011 at 10:56pm  
SandyR,
You do need to get a second opinion. The MN Mayo Clinc is good and the University of Iowa Hospitals. That is where I had my surgery done almost 7 years ago. Yes, Dr.Steinberg is the best but some of us don't have finances or insurance to cover the cost. I am on Plavix, apirin and Crestor also.
Take care, Skay
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nv3
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Re: Let me Introduce Myself....
Reply #6 - May 3rd, 2011 at 3:39am  
Hi Sandy-
I would send your test results to Dr. Steinberg to Stanford Medical Center at the Neurologist center for Moya Moya. Dr. Steinberg and his highly qualified team will be able to assist you. Or you can go on the internet under Dr. Gary Steinberg of Stanford, CA .
I'm seeing Dr. Dodd, one of this associates, but Dr. Steinberg had reviewed my tests, after 4 opinions. The decision came when I was diagnosed with Vasculitis in Feb, 2011 after having series of tests done, including brain biospys. This was a decision I had to make quickly before they were going to put me on the cancer meds for life.
I'm pleased with Dr. Steinberg and his team. Good Luck and God Bless you and your family!
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