Jill thanks for your response,I'm not the only mom carrying a little guilt with me.Most of the time I know it's really not rational ,but sometimes I just have to wonder if I had acted sooner would the outcome be different.Especially when I see pictures of Kathleen before her strokes.Hindsight is great if you can pass these little things along to others to use, but it sure does lend itself to some guilt when you let it.Most of the time I'm just happy she's here and alive and happy.Thanks Jill,I'm not alone, and this site always reminds me of that fact.
(((((((((HUGS)))))))))
Mary Grace

Mike your so right.Even though some people live a long time without a seriouse stroke it's a gamble that I would never take.In Early March of 02 kathleen was scheduled with Dr. Scott forJune.She had had her angio and it really didn't seem urgent but, about 2 weeks later she suffered another stroke.This is when Dr. Scott squeezed her in, in April.The day  we were driving to Boston she had another stroke (the day before surgery) it was decided to go ahead with surgery even though she had had a stroke because she was obviously declining very quickly.She had 2 more strokes between surgeries which were severe.Your right NO one should wait it would be like playing Russian Roulette in my opinion.Good for you, who wants to live with that guilt?
Mary Grace

Dear Rosemary, 
 
Welcome to our family!  I am sorry about your daughter's diagnosis, but very glad you've found your way here!  This is a great place to learn about MM, and there are some wonderful people here, all who have traveled this road in one way or another.   
   
I am the mom of a 19 year old girl who was diagnosed and had two bypass surgeries in May/June 2004.  We consider ourselves very fortunate that our daughter had had "only" two small strokes prior to surgical treatment.   
   
The best thing you can do for your daughter is to read up and educate yourself about this disease.  As you become more familiar, you will understand that this is not a "wait and see" disease.  It is progressive, and ideally surgical treatment is obtained PRIOR to the damage that may be caused by a devastating stroke or hemorrhage.   
   
I don't know the details of your daughter's history, and I am definitely not a medical professional.  Unfortunately, the majority of the medical profession is just not well educated about MM.  A wait and see stance is not uncommon - be very aware of this.  The question you have to ask is, what are they waiting for?  This is a progressive disease that won't get better or improve with medicinal treatment.  The true experts, doctors who see it on a DAILY basis, are few and far between.  The leading specialists are located at Boston Children's (Dr. Michael Scott) and Stanford (Dr. Gary Steinberg).   Dr. Steinberg operates on both children and adults, and Dr. Scott primarily sees pediatric patients.  Both are happy to offer an opinion.  You might want to seriously consider sending your daughter's test results to one of them for a recommendation.  Another consideration to add to your thought process - the experts have anesthesia and nursing teams who see MM on a daily basis.  This is very important, as the neurosurgeon is just part of the overall care.
   
I don't want to frighten you, but as a mom, I'm sure you don't want someone who just dabbles with this disease to treat your daughter.  With the lack of MM knowledge amongst the medical profession, it is not unusual for people to have to travel away from home to seek good medical care for this disease.  I've met many people from out-of-state and out of the country who have come here (California) for treatment by Dr. Steinberg at Stanford.  It is commonplace - almost 400 surgeries (amazing when you consider that MM supposedly occurs in 1 in every 2,000,000 people!).  Dr. Scott also treats patients from all over.

To be forthright, I must say that I now work for Dr. Steinberg at Stanford.  After going through my daughter's surgeries, recovery, and then (on a volunteer basis) becoming very involved in supporting MM patients coming here from out of town, my job with them just kind of evolved.  Suffice it to say that I was so impressed with the program, becoming part of it seemed exactly what I was meant to do.  From a personal perspective, Dr. Steinberg is definitely my hero!   
   
Good luck to you as you continue the education process.  You and your daughter will be added to my prayers.  Please don't hesitate to ask questions (you'll have a million of them!), and I hope you can decide on a plan of action that seems to best suit all of you. 
 
Warmly, 
Jill