Hi Emily,

Welcome to our family!  I'm sorry that circumstances led you here, but you've come to the right place for information and a wonderful support group. 

I have an 18 year old daughter who was diagnosed and had her surgeries when she was 17.  We were fortunate to land in the hands of one of the premier MM specialists in the U.S., Dr. Gary Steinberg at Stanford.    Though we were scared to death, knowing that Tara was in the hands of an expert was indescribably comforting to us.  She is now 16 months post-op, and doing very well.

I know you're reading everything you can which is good, because the more you know, the better off you'll be.  One of the most important things to do for yourself is to find a neurosurgeon with lots of MM experience.  There are many great doctors out there, but the ones who see MM the disease on a DAILY basis are few and far between. 

A couple of other things to remember:  1) Each patient is different.  There is a wide range of experiences you'll read about on this board, but each patient has had a different starting place.  Outcomes are dependent on many factors (has there been a debilitating stroke or hemorrhage prior to surgery, expertise and knowledge of the medical staff, other contributing medical factors, etc.)  2) MM is a progressive disease.  You'll definitely want to move forward with educating yourself (sounds like you're doing that!) and getting appropriate treatment as soon as it is feasible.

You asked about hair.  There is a range of how this is done also, and it seems to differ from institution to institution.  (Tara had waist-length hair and was terrified about this as well!)  Speaking for Stanford patients, the hair loss is minimal, and really not even noticeable unless you're looking for it.  The section of hair Tara lost was about 4 1/2 inches long by about 1 1/2 inches wide on each side of her head.  Once she was able to wash her hair, the hair above the shaved part completely covered what was gone.

Please feel free to continue asking questions, as you'll have an instant family here.  People are glad to share their experiences, offer their opinions and provide whatever support you may need.  As scary as it is to hear the words, having MM definitely isn't a death sentence.  With proper treatment, you should have many more decades of good-quality life!  We'll be here for you whenever you need us!

Warmly,
Jill      

Hi Emily,
Welcome to the site - It is AWESOME!!
I cannot add anything that the others haven't already covered but just wanted you to know that I am in Perth Western Australia, and if you need to ask any questions please feel free to email me - I keep in touch with several others in Australia - Helene (Patch) has just found the website and will be going through surgery shortly, and there is also Emma in Victoria that I keep in contact with
Moira

Hi Emily,

Welcome to the "family"...  You will find a wide range of people here from all over the globe, who either have this disease or know someone who does - be it their child, a spouse, etc...

The people here are warm, encouraging and extremely knowledgabl...  knowledgibl...  knowlegabl... SMART and will help you in many different avenues.

There's *TONS* of information here, so sit back, put on an extra pot of coffee and dive in.   

I'm sorry that you had to find us in this way, but we are still very glad that you found us!

-= Dewski =-

Hi Emily,

Welcome to the "Family".  I for one, cannot say enough about this website   .  It has helped answer some of the questions I had and given me tremendous support.  It sure makes me feel better that I'm not alone. 

Aloha,
Jan

Emily

MY name is michelle and I was just diagnosed nov.4, 05
I know about the emotional rollercoster you went through cause I'm going through It now. I'm sorry to hear that you have had eight strokes and are on the fast track to surgery. I'll pray for the both of us and I hope you and I can talk soon.
Michelle