Hi, My name is Laura.  I am a 39 year old female from Monroe, La.  After several years of horrible headaches and many doctors, hospitals and different diagnosis, I suffered a stroke a month ago today.  I was referred to Southwestern Medical Center in Dallas because the doctors here didn't know what was wrong.  They suspected MS.  After many test, Dallas diagnosed me with MM.  I am on many meds and will have a follow up visit with my neurologist in Dallas on Monday (2/l).  He didn't seem to think that surgery was an option for me.  I'm not sure why unless it is the location of the blockages or the severity.  One side is blocked by 50% and the other is by 40%.  I  am very scared and not sure where to turn.  It is so comforting to know that there is this website to visit with others that have gone through the same thing.  Thank you for reading this and please email me with any advice or words of encouragement.

Hi Laura,

My sister Patty was diagnosed with mm in 12/97.  She was 41.  In 02/01 she had a massive stroke.   The results of the stroke were awful.  She recovered enough to have the surgery at Mayo Clinic at Rochester Minn in 12/02 on one  side and the  other side 01/03.   Patty is doing much better but still unable to walk.  She says that she will   walk again.  

I wish this website existed a few years back so that I was aware of the urgency of the surgery before a stroke.  Please do not underestimate the need for  the surgery.  

DJ has done a wonderful job on this website and there is a feeling of bonds thru mm.  Please keep searching until you find all the right answers for you.        

Janice

Laura,

Please click on General Posts and go to the subject 'Re:  anybody out there who has not had the surgery'  Read Reply #4.  Mar did a great job explaining the syndrome.  Also, please read Reply #6.    

Again,  read all you can.    

Janice

Laura,
Welcome! I, too, wish this site was here a few years ago, but it's here for you, now. Read as much as you can on this web site and as many of the links as you can. Never stop asking questions and don't take no for an answer. Everyone here is great and supportive. [smiley=hug.gif]

New Buddy,
                   I'm sure others are sick of my story but my daughter at 20 yrs. old last year had 4 strokes she was unconsious for a week she has had to learn how to walk and somewhat talk again she walks with a limp and still cannot use her left hand and is still incontinent, her hand is coming back very slowly. She cannot take care of herself at all, at the time this happened she was already out on her own bought her first house already with her fiance and was getting married this past Valentines day. All of that was destroyed she now lives with me and her plans and life and future as she new it has done a complete 360 and no longer has a fiance. The moral of my story this disease destroys futures and lives if not taken seriously or diagnosed right, get 2nd, 3rd, 4th opinions if you need to I can't believe there is no surgery that can be done. DO NOT wait until you have strokes, you more than likely will be rehabing for years to come. I hope I wasn't to harsh but you need to keep searching until you get the help you need, and realize how very devistating this disease can be.
                                        Nancy :-/

Laura:

My name is Paula and am also 39 years old.  I had a stroke  2 weeks after having my son.   The date of my stroke was Dec.. 17 2003.   It was a mild stroke and I was recovering for it when I had an angiogram.  I was told I had Moyamoya disease on Monday.   I am scheduled for a consult on April 2nd with Dr.  Martin at UCLA.  I would love to talk.  

Paula

Hi Paula!  I am so glad to see another 39 year old just like me that was just diagnosed with this [smiley=huh.gif]weird disease!  I am so scared!  I have contacted Dr. Steinberg at Stanford in California by email and he wants me to forward my MRI's along with copies of my arteriogram to him and he along with a committee of other neurosurgeons will meet and determine whether surgery is necessary not for me or not.  My doctor in Dallas says he wants to follow me for now and decide in 6 months or so.  I am on 23 meds a day!  If you would like to talk,  my email is lweableschwab@hotmail.com and my phone number is 3l8-322-6465, I would love to talk with you.  There is just too much to write.  Laura [smiley=confused.gif]

jenanshanesmom wrote on Mar 10^th, 2004 at 4:30pm:

I had a stroke  2 weeks after having my son.   The date of my stroke was Dec.. 17 2003.

Hi Paula.  I do not have moyamoya (my sister does), but I wanted to say hi to another new mom.  I had my son six weeks after you.  How have you been managing with a newborn after having had a stroke?  It's hard enough in good health.   [smiley=bow.gif]

Diane

I am managing very well since I have a ton of help. ;;D
My family and friends are way too helpful.  This week both kids are at day care since I am not allowed to lift over 10 pounds.  My son, the  moose, is 15 pounds.  Yikes.  Good luck!  By the way my stroke affected my right side and I used my left for feeding and cleaning.  The real problems are my speech and my writing.  So this is great practice.

Paula

Hi Laura, how close are you to Houston? We live there. Jennifer started out seeing Dr.James Grotta and then he sent her to another doctor for her surgeries.He's one of the best.I see him on T.V. all the time.I will give you his number just in case.It's hard to get in at times because he goes everywhere.He works out of Herman. 713-500-7082.There is another girl that lives here that just had her surgeries.Jennifer went into the hospital one day and they ley her come home from ICU the next morning.Never had any problems.She was 18 at the time.22 now She was also pregnant at the time which we didn't know.Good luck