Hi, everybody:

     I'm a Chinese, my 4-year-old daughter has been diagnosed to
have MM disease. I feel so hopeless and helpless while I were
told that.
     I'm glad to finally find this wonderful website, and have checked
much messages there.

     I just want to know, this disease will affect, her intelligency and
body development, in how much extents, can she still have chance
to grow and live like other normal children?

     thanks in advance.

Thank you,  CarasMOM, you are so kind. 
I have read all your posts, and others',  they encourge me so much.
We all so love our princess and will never give up, no matter what
will happen,  but i hope the thing will go  in the better way.

My daughter's symptoms are:
07/23, after swimming,  she had weak right arm, and can't speak clearly,
that lasted about half hour or so,  then she became okay.
08/21, she suddenly said her right hand have no strength,  while drawing,
then can't speak clearly, we immediately took her to the hospital,  but after
about half an hour, she became fine again.
so they gave her MRA test,  the film said there are abnormal vessels, and
so-called "cloudy" vessels, so they suspected this is MoyaMoya.
and we looked for another doctor he just completed a Moyamoya treat,
he were so sure it is that!

that's all, i don't know these symptoms are just the stroke you said,
now we plan to take her to hospital, for further test, such as DSA,
which they advised us.

so appreciate you again, and say good luck to Cara, her story has
given me so  much hope.

Thank you, gotchlorin

here is so good place that i feel much warm.

yes, i'm now collecting as much information about MM as i can,
i even ask friend's help to translate large materials in Japanese.

now i just worry, my daughter is so small in age (only 4 year old and 2 months),
and seem be normal most time,  so  she need have to risk the brain surgery immediately? or can wait for her growth to large age, eg, 6, 7 year-old?

thank you, everybody.

Dear hjz,

Only a MM expert can specifically answer your questions about your daughter's condition, and how soon she should have surgery.  The urgency depends on the percentage of her occlusion. 

In my daughter's case, she too seemed "normal" almost all of the time.  However, once she was diagnosed, it was determined that she should have surgery within 30 days, as her occlusion was severe.  Like Mar said, the risk of a stroke (that could totally change a life) usually far outweighs the risk of surgery. 

I hope you continue reading and learning all you can about MoyaMoya.  Please don't hesitate to keep asking questions, and I hope you can soon figure out how to best move forward with care for your precious daughter.

Warmly,
Jill

Hi hjz !

If you look above you see "Medical Info "  Click on that which will give you a down menu..then click on MoyaMoya Surgery...it will show the different kinds of surgeries.   Cara had the EMS (muscle graft on the brain - indirect - takes 6 months to a year or more for it to be fully functional  as new arteries grow from that graft which is taken from the scalp) and she also had the STA-MCA Bypass which is direct and allows blood flow immediately.  Everyone is different.  Depends on the doctor, the patients condition, the available artery set up in the brain.  I think several people on this site had the EDAS.

You asked in an earlier post about your daughter's size...should wait until she's bigger.   There are patients that are babies that have this surgery.  I need to find the website of a little girl much younger than your daughter.   Cara's local neurologist recommend we wait until Cara was older....she started having problems at 2.5...then nothing til she was 4....then 5...then at 6 they said the same thing...she's not ready for surgery yet...we finally decided to get second opinion...and the second opinion did further testing...including MRI (showed all the tiny TIA's, strokes) and the SPECT test showed the lack of blood flow on the right side...the blood flow that she did have on the right side was actually coming from the left....so within a month she was operated on the right side...that night in recovery room she had a stroke on the left side that left her right side unable to do anything......five weeks later - she got stronger - had her second surgery on the left side and that surgery gave back much of what the stroke took away.

What would I have done different now I look back ???  I would have gone after second, third opinions sooner because this disease isn't a "wait and see" as it is a progressive disease...plus everyone goes at a different pace.   We were told it probably won't be until Cara is in her 20's that she ll need the surgery.   And yes prior to surgery, reading all about MM, we all felt Cara was a walking time bomb...anything could go off...a major stroke or anything very serious, that could cause irreversable damage.

Cara is from Guatemala...her birth mom was only 4 ft 6in tall so she was a very small baby when we got her at 7 months....she continued to grow...but she has grown so much since the surgery.   The stroke did however set her back (being six but was like a three year old for several months)...she repeated Kindergarten last year...just jumped from a three/four year old to a seven year old...shes in first grade now...catching on, full of life, just amazing....still needs to catch up little bit physically (can't do hopstotch - hoping on one foot too well but is running well, swimming well (couldn't last summer).

Hang in there, continue to go after everything you can.  Sounds like they are talking about surgery rather than making you wait.

Keep asking questions...we'll help you anyway we can.

hugs,  Carol

Hi hjz,

I'm sorry to hear of your little one's diagnosis, but I can tell you that there is help for her!   

My knowledge is somewhat limited, but I can tell you that there are many people here who are extremely knowledgable about the latest treatments and can answer many questions for you.

This board is a fantastic source of support and friendship.  Please know that the people here will help you to understand MM in anyway they can.

My son is 17 years old and is going to Boston for surgery in 15 days.  I don't think I could have gotten this far without the support network that we have found here.

-= Dewski =-

Hi hjz -

I'm sorry you had the need to find this place, but I'm glad you did as we are a wonderful support group! 

Cerebral Angiogram is the definitive test to diagnose MM.  It will also help to determine the severity of the narrowing.  Other tests include MRI/MRA.  I didn't have SPECT scans, but I know that Dr. Steinberg gives that test to his patients.  (My disclaimer - I'm not a doctor....etc, ect.)

-Shari

Thank for everybody's comments, they're so valuable.

I plan to bring my daughter to America, to look for Dr. Steinberg, or Dr. Scott's treatment,  so i have to know how much the surgery cost are, and how long the surgery will last and she have to stay at hospital.   so  i can get ready financially.

thank you again.

hjz

Hi,  hjz and everyone in this community.
My name is yuriha.  I'm Japanese and have a 10 year old daughter who has MM and done STA-MCA bypass surgery four years ago. Since then she has been doing great !

I've been reading this site for months, and when I read hjz's  post, I feel I could tell another possibility.
hjz, I think you could think about bringing your daughter to Japan.

I guess medical fee should be very expensive in the US, especially for person who has no medical aid or insurance.
Here, in Japan, medical fee is not low, but compared to the US, it can be acceptable. There are some brain-surgeons who have skilled MM surgery, particularly STA-MCA bypass.

Japanese MM patients have special medical aid from the local government and their medical expense can be covered. (you should pay about a hundred fifty dollars a month, but after that, all free!)I feel sorry to say that this medical system would not applied for foreigners.

Take care!  I will keep your daughter in  my prayers.

yuriha

   

Hi, everybody:

I have read some studies about MMD recently, One Japanese study about "Determinants of intellectual outcome after surgical revascularization in
pediatric moyamoya disease: a multivariate analysis.", said,
indirect surgery through "small craniotomy" has worse intellectual outcome than indirect surgery through "large craniotomy".

so I want to know, what's the different between these, and surgeries you performed were through 'small craniotomy", or through "large craniotomy",  or the currently frequently done surgeries are though what?

thanks

hjz