Hi Grannybowman and welcome to the Moyamoya family!

I'm sorry to hear your daughter has been diagnosed with MM and she has had seven strokes. You must be very worried and I understand why you are scared.

Because MM is considered rare, and not all doctors are familiar with MM, we often hear of stories like your daughter wherein it takes months and sometimes years to be properly diagnosed. Also, we hear stories wherein doctors take a wait and see approach when they are unfamiliar with the disease.  Since MM is a progressive disease, and ultimatley strokes occur, one cannot take a wait and see approach.  This disease requires an individual assessment by a doctor familiar with MM disease.

Not knowing the full extend of your daughter's present condition and the fact I'm not a doctor, I would suggest your daughter's angiogram be sent to Dr. Steinberg at Stanford for an expert opinion. He is one of two MM specialist in the USA an he will render an expert opinion at no cost.  Once you have an expert opinion, you will better know how to move forward. Dr. Steinberg's information is located on this web site or you can go to the Stanford Neurological page link to get the information and phone numbers.

In my opinion, it certainly sounds like your daughter requires immediate treatment but again, I'm not a doctor and I don't know what condition your daughter is in at the moment.  I would get an expert opinion ASAP.  I would contact Dr. Steinberg at Stanford ASAP to get a professional opinion on your daughter's current medical state and determine from there what needs to be done and how soon based on her present condition etc.

I hope this is helpful to you and wish your daughter the very best in getting properly treated as soon as deemed possible.

Please keep us posted on your daughter and know that you both are in our thoughts and prayers.

Hugs,

Lore  

Hi Grannybowman,

Welcome to the mm family. I am sorry to hear that your daughter was diagnosed with mm. It is a great shock and scarey. I agree with Lore that you should contact Dr. Steinberg at Stanford. He is the best. If your daughter has had 7 strokes I wound say that surgery is urgent. I was diagnosed with mm in 2002 at the University of Iowa. I was lucky enough to have a doctor that was knowledgeable about moyamoya.

Please keep us up to date and my prayers are with you and your family.    Sharon

Hi Granny,

The ONLY option for treatment is surgery. MM is definitely manageable by surgery, and extremely successful in most cases IF treated by an experienced MM neurosurgeon. Surgery introduces new blood flow to the brain by either “direct” or “indirect” bypasses, to avoid that inevitable stroke that comes with this disease.

Learn all you can about MM. If you arm yourself with knowledge, you’ll make informative decisions for your daughter and that makes it a little less scary.

We’re here for you if you have any questions. Feel free to ask.

Keeping you and your daughter in my thoughts and prayers

Mar

Hi Granny -

Everyone has already posted great advice.  Just remember we are here for you if you have any questions.  I'm sorry to hear about your daughter, but happy you found this site to support you.

-Shari