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Any MM's in/around North Carolina? (Read 8222 times)
moyamomof2
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Dallas, USA, NC, North_Carolina
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Any MM's in/around North Carolina?
Jan 9th, 2006 at 11:36pm
 
I'm curious to see if there are any MM's in the NC area?? I would be very interested in talking to anyone with this in common with me! Male or Female, christian preferred.
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"I can do ALL things through Christ who gives me strength" Philippians 4:13....that pretty much says it all as far as I'm concerned!!
 
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Shan
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MM Survivor ~ May 27,
2005

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Honolulu, USA, usa, 376, 346, HI, Hawaii
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Re: Any MM's in/around North Carolina?
Reply #1 - Jan 15th, 2006 at 3:20pm
 
Hi moyamomof2,

Welcome to this site.  ;Grin I'm not in NC, however, I flew all the way to NC (Wake Medical Center) to have my emergency double bypass surgery last year May.  I was honored to have been able to be seen by Dr. Takanori Fukushima who is a world renown and very well respected MM expert.  His office is located in Raleigh, NC.  You can call his office for more info (I believe he is currently in Japan right now and will actually be in Hawaii this month  ;Grin) or find out more info online at:



Take care,
Shan
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« Last Edit: Jan 15th, 2006 at 3:23pm by Shan »  

"Love, Accept And Respect All Things And All Situations In Life … They Are Especially&&Designed For Your Personal Learning" ~Howard Willis
 
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karen7493
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Glen Allen, USA, usa, 478, 160, VA, Virginia
Re: Any MM's in/around North Carolina?
Reply #2 - Jan 20th, 2006 at 9:55am
 
hello Shan, (did i get your name right?) My name is Karen Mottinger, and my 26 year old, Brantley Roberts, has had Moya Moya probably since birth, but he wasn't diagnosed until 3, and then it was another year until we even knew that surgery was a possibility.  It was considered "experimental" then.  He had 3 major strokes and more TIA's than I could even count, but it has been 20 years since then and he is fine as far as that goes. He has had many problems as a result of all the brain damage.  He has uncontroled grand mal seizures, 1 or 2 a month, so we have to be careful that he doesn't fall.  He walks, although with a limp, and has only partial use of his left arm.  His speech is excellent, and his mind is like a five year old.  I have 2 other children, both younger, and both wonderfully normal.  Their father died in 1990, and I remarried; my husband is a wonderful father and very devoted to Brantley.  Brantley is truly the joy of our lives.  He has taught my children patience and how to think of others first.  Because of him I have been able to see who God really is (you mentioned you were a Christian, I thought i was until Brantley, now I KNOW I AM, and my children too).   Brantley really is a delight to all who know him.  He is very social and loving,  and hilarious at times too!  I have posted some pictures on the website but I don't know if they are up yet. If not I will e-mail them to you.
oh incidentally I live right ouside of Richmond Va.  Where in N.C. are you?  My husband is from Statesville and still has a lot of family around there.  We go down that way quite often.  I look forward to hearing from you.  KAREN MOTTINGER
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Shan
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Honolulu, USA, usa, 376, 346, HI, Hawaii
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Re: Any MM's in/around North Carolina?
Reply #3 - Jan 22nd, 2006 at 2:09pm
 
Hi Karen,

Thank you for sharing Brantley's story with us.  You have definitely come to the right place!  Unfortunately, I do not live in NC.  I live all the way across the Pacific Ocean...in Hawaii.  However, I flew to North Carolina to be seen by a MM expert, Dr. Takanori Fukushima.  I had an emergency double bypass (STA-MCA) and an indirect surgery last year May 2005 at Wake Medical Center in Raleigh.  Wow, it is a wonderful hospital!  (In fact, I still keep in touch with a few of the NICU nurses there!  They were absolutely wonderful!)

Does Brantley have a doctor who is addressing his MM?  As you will read throughout the various posts here, it is important that the doctors we choose are familiar with this rare disease.  As for me, I was not properly diagnosed until my THIRD opinion, and by then, I had to have emergency surgery.  

In fact, I flew to NC from Hawaii within hours of the phone call I received that confirmed that I had MM!  I received the call about 4 pm when I came home from work on a Wednesday afternoon and was on the last flight to NC via Pheonix on the 10 pm flight that same night!  I remember being so scared that I was going to have a stroke during the flight and asked the ticketing agent before boarding if there was a doctor on board!

I too was having TIA's, etc..but my first AND second opinions (well respected neurologists) were treating me with medications alone and didn't even offer me the opportunity of surgery!

As I mentioned earlier, you've come to the right place!  If you have any questions, etc...you can post them here, and we'll all try to answer them.  I'm sure there are others here from VA!  Wink  

Please keep us posted.  I'll check to see if DJ has posted your pics.  Welcome!  Smiley

Take care,
Shan
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« Last Edit: Jan 22nd, 2006 at 2:10pm by Shan »  

"Love, Accept And Respect All Things And All Situations In Life … They Are Especially&&Designed For Your Personal Learning" ~Howard Willis
 
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Bridget_K_Thomas
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Wilmington, USA, usa, 482, 199, NC, North_Carolina
Re: Any MM's in/around North Carolina?
Reply #4 - Apr 11th, 2006 at 11:11am
 
Hi,
My daughter Alison has MoyaMoya. She is 26 and lives in Wilminton , NC and had her surgery at Duke with Dr Alan Friedman. She is a very active in our church and a Christian. We go to First Presbyterian Church in Wilmington and have received wonderful support from our church family. Please tell us where you live as I am sure she would love to meet you!
Best,
Bridget
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gman
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greenville, USA, usa, 488, 182, NC, North_Carolina
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Re: Any MM's in/around North Carolina?
Reply #5 - Jun 14th, 2006 at 9:10pm
 
Hi all, i go by the name gman and im in the greenville,nc area. I was diagnosed with mm in 2001. My e-mail is yeldog2005@yahoo.com if you have any questions i can answer or just want chat feel free to contact me.
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moyamomof2
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Proud patient of Dr. John
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Dallas, USA, NC, North_Carolina
Gender: female
Re: Any MM's in/around North Carolina?
Reply #6 - May 3rd, 2007 at 8:40pm
 
Wow, a lot has happened in the last year!!  I am still interested in talking to/meeting any other MM'ers in North Carolina.  I went back to work after my 2nd surgery and am doing fantastic!!  I actually just got a wonderful promotion at work (I work for the Billy Graham Evangelistic Association) and am now the Switchboard Operator!!  I give God above all the glory and praise for my healing, along with Dr. John Wilson, of course!!  Smiley I had 6 strokes in all, and speech deficits as well as short term memory loss, so I have really come a long way.  Like I said, I really want to talk to other MM survivors from the great state of NC!!!  Hope to hear from you all soon...  Smiley
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"I can do ALL things through Christ who gives me strength" Philippians 4:13....that pretty much says it all as far as I'm concerned!!
 
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JeepNerd
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Kernersville, USA, usa, NC, North_Carolina
Gender: male
Re: Any MM's in/around North Carolina?
Reply #7 - Jun 18th, 2008 at 1:18pm
 
Well I wanted to put our name out here for NC.  Emily was diagnosed early last week and is now in therapy at Forsyth Hospital.

We live near Winston-Salem, NC.  Emily is 34 and this was pretty unexpected but we ended up at the right hospital and they were quick to find the issue (aertialgram) and subsequent MRI/dye shows that her blood flow is ok for now, no surgury.

Keep her in your thoughts and prayers.
Sam
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WWW sammy_hinton_jr sammyhintonjr  
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egray
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Re: Any MM's in/around North Carolina?
Reply #8 - Sep 10th, 2009 at 2:38pm
 
I realize there hasn't been a post here in over a year, but I just joined.  My fiance, Josh, is 29 and had 2 strokes in April.  He was diagnosed with MM in June.  We live in Durham NC.  I would be very interested in meeting others who are going through the same thing.  Also, does anyone know if Dr. Fukushima still works in this area?  Josh's doctor told him he would have to go to Stanford or Boston if he needed surgery.
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moody
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richmond, USA, VA, Virginia
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Re: Any MM's in/around North Carolina?
Reply #9 - Sep 26th, 2009 at 2:15pm
 
Hi, I'm not in NC but in Virgina, and I had sugeries with Dr. Tamargo at Johns Hopkins. He is the best doctor and best manor as well. I love him. You may check him out so you don't have to travel far.
Take care,

Kieu
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Yesterday is past, tomorrow is future, today is the gift, that why we call it present.
 
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sandy m
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Asheboro North Carolina
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Re: Any MM's in/around North Carolina?
Reply #10 - Feb 7th, 2010 at 6:50pm
 
Hi, My name is sandy i first came to this sight in 2001 when my son Jacob was 9mths old I dont get to come by as often as i like cause I have 3 children with mm i stay pretty busy just saw you asked about North Carolina I live in Asheboro about 45 minutes from wake forrest medical at the time i found out we were at brenners children hospital but no one knew enough about mm so we flew to Boston were Dr Scott  done surgery for two of my children,i really love this sight i dont feel so empty and alone when i come by to visit this sight  take care love and prayers
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sandy maness  
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sandy m
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I Love MM.com!mommy of
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Re: Any MM's in/around North Carolina?
Reply #11 - Feb 7th, 2010 at 6:56pm
 
sorry correction i didnt come here in 2001 jacob was diagnosed in 2001 i didnt find this sight till afew years later there was nothing on the web about moyamoya i just kept trying out of desperation and found this sight sorry dont want to get it mixed up
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sandy maness  
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