Dear Aaron,

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 Allyson 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 a devastating stroke or hemorrhage.

I don't know Allyson's history or what doctors are recommending for her, and I am not a medical professional.  I want to caution you though, that a "wait an see" attitude from a doctor is usually something to question.    

Unfortunately, the majority of the medical profession is just not well educated about MM.  The wait and see stance seems to be fairly common.  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 free of charge.  You might want to seriously consider sending your daughter's test results to one of them for a recommendation.  

I don't want to frighten you, but as a dad, 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 there - they've performed several hundred surgeries (amazing when you consider that MM occurs in 1 in every 2,000,000 people!).  Dr. Scott also treats many patients from all over.

Good luck to you as you start the education process.  You and Allyson will be added to my prayers.  Please don't hesitate to continue asking questions, and I hope you can decide on a plan of action that seems to best suit your precious little girl.

Warmly,
Jill

Hi, Aaron.  I see in your bio that you are from Hagerstown, MD.  I used to live near Fredrick, when I was little.   Now  I'm in Southeastern Pennsylvania.

I was wondering where your daughter was diagnosed.  We have been to John's Hopkins with my daughter before, although only a couple of times.

My daughter, Daphne, is 28 months old.  She suffered from seizures at around 3 months old, and no one was able to figure out why.  When she was 15 months old, Daphne suffered two major strokes, and we learned that she had severe moyamoya disease on both sides.   Fortunately, we were able to get an excellent surgeon to help Daphne (Dr. Steinberg in Stanford, CA), and she has been doing much better.  Her follow up tests about 6 months ago looked excellent, so we are very hopeful that Daphne will not suffer more strokes, and can benefit developmentally from improved blood flow to her brain.   Daphne has a website, if you're interested:  www.daphnestory.com

I would love to know more about your daughter's situation.   I agree with Jill that Moyamoya is not usually a "wait and see" type disease, and I also agree with Jill's recommendation to seek a second opinion from Dr. Steinberg or Dr. Scott.  It seems like you are fortunate that Allyson was diagnosed so early... the sooner she is treated, the better her chances will be.   Most people with Moyamoya who are treated by an experienced surgeon before major damage occurs are able to live normal, full lives.

I know it is scary to think about this disease, and to contemplate neurosurgery, but I think just about anyone on this board who has been through it - either personally, or with their children - will tell you that it is much better to get a diagnosis and to be treated, than to be unaware and run the risk of stroke.

Please feel free to email me if there's anything I can do.  My email is moyer305@comcast.net. 

Jenny