Hi everyone, my name is Joong and I am 28 years old. I was just diagnosed with moyamoya one hour ago.  My symptons are not as severe, I only get numbness on my left arm and leg.  I went to the doctor because three weeks ago, my whole left side went numb and I collapsed.  Since then, I have just had minor numbness on my left side.  My doctor does not suggest surgery, and that I should just take an aspirin a day to thin my blood.  I just wanted some info on moyamoya, because all my doctor could tell me was to look it up in the internet.  I hope someone can give me more info.  Thanks.

Hi Joong,

I'm sorry to hear of your circumstances, and know you must be a little bit in shock tonight.  The good news is that you found this site - welcome to our family!  Everyone here has been through this disease, either personally, or as a family member or friend.  I'm so glad you found your way to us!

As Michelle said, your doctor definitely does not know MM well.  This disease involves a progressive narrowing and eventual occlusion of the carotid arteries.  Aspirin will serve to thin your blood and keep it flowing, but blood cannot flow through an artery that is occluded. 

Read, read, read and then read some more, so you become well-versed with this.  As you read, you will find that most of the medical profession knows very little (or nothing) about MM.  My suggestion is to get to a MM specialist - one who sees and treats it on a daily basis.  MM is not a "wait and see" disease.  Putting off treatment could have devastating consequences.

I am curious which tests your doctor used to make the diagnosis.  Most of the MM specialists will allow you to send tests (angio films, etc.) to them for their opinion.  I would strongly suggest that you pursue a second opinion!

There is a wonderful group of people here.  Please don't hesitate to ask questions or to lean on any of us for support.  We're here for you, and will help see you through this!  Good luck as you start the education process and sort through your options - you'll be in my thoughts and prayers.

Jill

Hi Joong -

Definitely, Definitely, Definitely get a second opinion - prefarably from a MM specialist. 

When I was first diagnosed my neuro gave me the same answer - I didn't need the surgery.  Then I found this site and several people sent me a PM (Private Message) and emphasized the need for the surgery.  I didn't want to listen right away.  I wanted to do the research and make a decision on my own.  But you know what - They were right!  The more and more I read I became convinced that I needed the surgery and sought out Dr. Scott in Boston.  I felt like a ticking time bomb just waiting for another stroke to happen.  (I had the same symptoms as you - but on my right side.  I went for an MRI which showed a stroke and then I sought a neurologist).

Please, Please, Please don't just settle for one doctor's opinion.  There are links to docs on this site - Read, Read, Read!!

-Shari

Joong-
Like everyone else mentioned you should read everything you can about MM and get an opinion by a MM specialist. I was originally told that i should not have surgery and was put on a blood thinner. I went nine months experiencing TIA's until i found this website and found answers. I had surgery shortly after finding this site and now i show no symptoms. Please look into your case more and get more than one opinion cause many doctors do not know how to treat MM. Hope all works out and let us know if we can help.
Christy