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 and welome to our moyamoya family!  We are all here to help in any way we can and answer any questions that you may have.

I see that you are from New York City.  I encourage you to read the board that has surgeons listed in it and read up on all the specialists that are listed.  In fact, you should read as much as you can on this board and learn as much as you can......because as you know, knowledge is power!

It's a shame that you received that kind of repsonse from your doctor.  It tells me that he must not know much about the disease.  The best advice that I can give you is to please get a second opinion and I can't stress enough how important it is that you get that opinion from a moyamoya specialist.  And you must know that time is of the essence.  You really should do this as soon as possible.  In my case....which may not be in every case....if I had not moved as fast as I did to get the surgeries on both sides of my brain, the neurosurgeon says I was on the verge of a major stroke.  

Please read as much as you can on here, and let us know if we can answer any questions for you.  We are here for help, support and information.

Michelle

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 there, You should definately get a second opinion! Dr Steinberg did surgery on my mom 7 months ago after she suffered two massive brain bleeds. Surgery is, to my knowledge, the only option with this disease. [smiley=twocents.gif] Getting to a specialist as fast as possible is important. In the mean time study as much as you can about this disease so you will know better how to fight it. Good luck to you!! ;)

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

Hi Joong,  [smiley=wave.gif]

Welcome to our family. I haven’t much more to add, our MM family said it all so well and they all speak from experience. But I too must tell you, although your symptoms are not severe, they are in fact MM warnings. Looking back, my niece’s symptoms were not severe at all either. She was 20 years old, and had numbness in her hand, she said she couldn’t hold a pen correctly to write her name, then this disease struck her suddenly. She had 4 devastating strokes, which left her in a coma and completely paralyzed on the left side. I’m not trying to frighten you, but in her case and in many others, doctors without enough moyamoya experience have said to wait, so I can’t emphasize how important it is to seek a second opinion with a MM specialist, one who deals with it on a daily basis. They will know from experience with this rare disease, whether it’s safe to wait and how to manage each individual case.

As you learn more Joong, you will see that MM is in fact a progressive disease, so for your future, I too urge you to learn all you can about MM, and teach your other family members as well. You’ll then be able to discuss your case with anyone in the medical community and make informative decisions down the road.

You'll be in my thoughts and prayers. Please keep us posted.

Mar

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

Joong,
         They all are right but know that if surgery happens before a major stroke you can quickly recover and have a normal life, this has happened in many cases but as Mar told oyu my daughter wasn't so lucky, you are , please act quickly and get that 2nd opinion, send those films to Dr. Steinberg or Scott they WILL help. Keep us posted. Good Luck!
                 Nancy