Hi guys,
I want to say that you all have been a great support system  for me and my family (Chloe09 is my 13 yo daughter) and this we site has been VERY informative for me.  Dr. Steinberg recieved my films yesterday (Nov. 11) and I am waiting for him to review them, I am so nervous to hear what he has to say, has there ever been a situation where surgery was not done?  I am on these horrible blood thinners that leaves me basically unable to do anything I enjoy, I fell on my deck the other day and ended up with a hematoma on my leg  :( Darn Medicine  :P  Anyway just jabbering because I am nervously awaiting some news.  Thanks again for all the support   [smiley=hug.gif] [smiley=hug.gif] Kathleen

Kathleen,

I understand the nervousness you have while you're waiting.  Most of the time, it's just better to know what you're dealing with so that you can get on with things.  We'll keep you in our prayers . . . but you're in the right hands if surgery is needed!  Please keep us posted!

[smiley=hug.gif] Jill

Hi Kath....

...please post on the regular MoyaMoya board...this is MM related..you'll get more response that way.  It was nice meeting you on LIVE CHAT the other day !!!! I wouldn't worry about that yet.  My daughter was diagnosed at 2.5...but didn't have her surgery until she was 6.5...varies from one MM patient to another...but you are in GREAT hands going straight to one of the best so he'll be giving you the best advice.  And I'll keep praying for you that all goes well and continues to do so.
[smiley=hug.gif] [smiley=hug.gif] [smiley=hug.gif] CarasMOM

Kathleen (by the way my daughter and sister's  name is Kathleen).I agree, the waiting was the worst,Kahtleen was diagnosed in Jan.2002 and her surgeries were in April 2002. It seemed like forever waiting, and of course watching her every move.You are in great hands.My prayers are with you and your family.
Mary Grace

Thank you all for the reassuring words, I sure do need to hear them right now.  Tomorrow Dr. Steinberg should be viewing my films, keep your fingers crossed  :) I will keep you all informed and thank you for the prayers.

Kathleen-
I had surgery done by Dr. Steinberg on November 3rd.  I live in Ohio and his staff was absolutely wonderful with me.  They made everything so easy.  I will keep you in my thoughts that you will receive good news or at least a good solution.  I remember well how hard the waiting was!  Hang in there!!
Chelsie

Hi Kath,

I’m a supporter here, and just wanted to say WELCOME to our MM family and also comment on a few of your questions. I must start by saying you’ve got the best doctor in the world looking at your films and he’s usually excellent about getting back to you with his opinion in a timely fashion. I’ve been told that he reviews his cases on Mondays. His “right hand man” so to speak, "Theresa," should get back to you and work out time and dates that best suits you, if that’s the direction you choose. I hope your insurance issues were resolved. It’s a shame that an insurance hassle has to be involved and delay getting the best possible care.

To answer your question,” was there ever a situation where surgery wasn’t done?” Well…Yes and no. It would all depend on how advanced your mm is and the degree of blockage of blood flow to the brain. Unfortunately, mm in most cases is progressive and surgery is the only option if you lack the proper blood flow. Your blood thinners are essential in treating MMD, they help prevent blood clots from temporarily or permanently blocking the blood vessels, which can cause a stroke, but NO medication can prevent the narrowing process from progressing, so the only way to get the proper blood and oxygen to the brain, is surgery. I don’t know your case, but whatever your situation, please know you have a lot of people here who’s been through it and will be there for you for support or any questions you may have.

I did notice that there is a member, Chloe09. Tell your daughter to feel free also to ask any questions. We'll do the best we can to help her understand all this. She can be a big support to you as well. Learning all you can and understanding MM is always more comforting, rather than fears of not knowing. Knowledge is power and saves lives, IMO.

We too wait with you for your results. Please keep us updated, and know you're in our thoughts and prayers.

Mar