Hi,
My name is Tamara and I just found out I have Moya Moya. It all started with a stroke about 5 weeks ago and I have been going down hill from there. I am scheduled to see a doctor in Atlanta, Dr. Barrow on March 22nd. My neurosurgeon here in Charlotte, NC has never treated or seen anyone with this disease. I am just looking for some support and advice that anyone can give me. I am now having mild TIA's, numbness in my right side, and speech problems. Is this normal? Any help would be great!!!
Thanks,
Tamara Hartman

Hi Tamara,  [smiley=wave.gif]  

I’m sorry you had to find us this way, but welcome to our MM family. We all understand your fears and will help you in any way we can. First I’d like to start by advising you to read all you can about this disease, it will help you make informative decisions you’ll face down the road and relieve some of your fears. The more you know the better!!  

Secondly, I thought you might want to know that I think we had another member here who had surgery by the doctor you’re going to see and they spoke very highly of him. That’s great news. You’re doctor should always have moyamoya experience, that’s a must with this rare disease. Here is the link to the post and perhaps you could e-mail Scgirl, I’m sure she’d be happy to help you in any way she could.

Dr. Daniel L. Barrow - Atlanta, GA
http://www.moyamoya.com/cgi-bin/yabb/YaBB.cgi?board=surgeons_board;action=display;num=1086192707

Yes Tamara, I’m sorry to say, but all the symptoms you mentioned are signs of MM. Please know though, the management of MM is very successful if treated promptly by an experienced MM specialist. Get to that doctor ASAP. You're in our thoughts and prayers.

We’re like family here and you’ll meet some of the sweetest people in the world. Feel free to ask any questions or contact any of us.

God bless, [smiley=hug.gif]
Mar

Hi Tamara,

Yes, welcome to our MM family!  You will find alot of information here, so read, read, read and, like Mar said, become as well-informed as you can about this disease.  There are some wonderful people here, ready to offer advice gleaned from their own personal experiences, and shoulders for you to lean on.

I know you're scared, and it doesn't help that the medical profession as a whole doesn't know much about MM.  The most important thing you can do for yourself is to get to a MM specialist - one who deals with it on a daily basis.  Read the link with questions to ask a neurosurgeon.  Be cautious if a doctor says "let's wait and see what happens".  The fact is that MM is a progressive disease.  It will not improve, and the consequences of waiting can be devastating.

As Mar said, your symptoms are definitely signs of the MM.  It is good that you haven't hesitated to seek treatment, and I will be anxious to hear about your visit to Dr. Barrow.  The best of luck to you . . . know that we're here for you, anytime!  We will add you to our prayers.

Hugs from California,
Jill    

   

Just a quick note...  Here is another note from someone who was seen by Dr. Barrow:  http://www.moyamoya.com/cgi-bin/yabb/YaBB.cgi?board=news;action=display;num=1105285268;start=11#11

Just wanted to make sure this got passed on.

:)

Mar, Jill, & DJ,
[smiley=hug.gif]I cannot say thanks enough for the support. This website has been a god send! THANK YOU DJ!!! I hope that you guys do not mind that I ask a lot of questions. This is the only place that has info I can understand. Not medical lingo. I have already been in touch with the person here in SC with MM thanks to you guys.
Love and prayers to all,
Tamara

applejac wrote on Mar 4^th, 2005 at 9:02am:

I hope that you guys do not mind that I ask a lot of questions.

Absolutely not!  That's what we're all here for!  By the way, I ditto what everyone said who previously posted.  Read, Read, Read...all that you can...Knowledge is Power!

-Shari

YES!!! They are right ,,,,READ. Read as many posts as you can,,, old and new,,, also the sites the refure you to. I have been on here for about 10 months now. So many things others have written in their posts have helped me to care for my sister better than any doctor here could have done. They have supported me MANY times! And answered a million questions I have asked. And many times my questions seemed, to me, to be un-answerable. But,,,, I would get someone who hit it on the mark. My brother now has it,,, and through this board, I am able to help him. He would not have even gotten a right diagonise as quickly, if I had not had the knowledge. My knowledge came from living with my sister through it,,,, and this board. DJ has done a WONDERFUL job here,,, as have all the others too. Please,,, try not to be too afraid,,,, stress isn't the best factor here. But be assured,,,,, you will come out fine!!!! You will be in my prayers.....MJS

Hi Tamara -
It's 6pm Sun and I just noticed that we were both on the site.  Want to meet in the chat room and we can talk more?

Kris (SC girl)

Hi Tamara,
 I can imagine how you are feeling.  Write anything that comes into your head on paper and ask when you see the Dr.  He seems to be one of the best in the country.  Learn everything you can and DON"T HESITATE to call on any of us on this site for a shoulder.  We have been through this as a parent or a patient.  So ask if you need anything.  Our 22 year old son just went through the procedures in January.  He's coming along fine.  Please keep moving forward and the best for you and your family.


                                Ron

Tamara,
Haven't heard from you since the weekend.  Hope you're OK :-[
Maybe you're just busy - I work at a newspaper and know how that goes.  Never even thought to ask what you do!

Your new MM friend,
SC girl  (Kris) [smiley=hug.gif]

Hey Guys,
Sorry that I haven't posted in a few days. I have a cold and stomach virus. Yuckooo! :-[ Thanks Ron for the words of encouragment!
To answer Kris's question about work- I used to be a loan officer and got burned out so now I am a wife/homemaker. Weird that I took time off from work and then get sick. Oh well, we all know that God has a plan for us all!
Take Care and God Bless!
Tamara