hi, my daughter had a stroke in dec at 15 year old and was told she had moyamoya.  in april and may she had moyamoya EDAS surgery on both sides of her head.   she just had a MRI/MRA yesterday and saw neruosurgery today..  they said

NO NEW STROKES YET.. but that her MOYAMOYA WAS GETTING WORSE. THAT THE BACK OF THE HEAD ATTERIS WERE STARTING TO CLOSE OF AND THEY WILL KEEP AN EYE ON IT TO WATCH IT CLOSELY

. that blood was still going thourgh but it was starting to get narrow and if it close off she can have more strokes and lose side vision in both eyes.  anyone else out there who's moyamoya got worse and who's back of the head ateris did the same as the front?????

please help . she is now 16 and has neurofibromatosis, adhd, aspergers, restrictive lung diease, high blood pressure, moyamoya, mild spastic deplisa cp, refulx, Esoptiagitis..

praying someone responds. 

Mary Grace I understand it the same way you do.  The EDAS or any of the surgeries is to supply blood from a new source because the the arteries at the base of the brain close up.  I could see how strokes or TIA's might be a problem if the arteries close up before a new blood system grows.  With the EDAS it takes a few months for a new blood supply to grow from the artery that is stitched onto the brain.  That is what my daughter had.  After six months she had a healthy new blood supply.

I will be praying for your daughter!
I'm not sure I understand what their saying to you about the arteries in the back of the head?   My daughter had bilateral pial synangios in march of 2010 in Boston w/ dr. scott and smith.  She was 8years old.  She has had her yearly angiogram and mri/mra.  We were told that we don't have to see Dr. Scott anymore- the surgery is working, blood flow is good from the surgery.  Have her be as normal as she can be , by doing whatever she can, but knowing her own body limits.  Still aspirin daily, neurologist and mri/mra yearly for rest of life.  He also told us that not to be suprised when we get the mri results back, there will always be more narrowing, eventually close- as the mm disease is progressive.   I still have so many questions and concerns about that statement, as far as how do we know those fresh arteries will stay that way in the future.  Will other arteries in the body narrow?   But I stop and think - take one day at a time.  It is a blessing that she is doing what she is now, and this surgery was a god send.
Are they getting angiograms? or just MRI?
Tammy, (Amanda's mom)

Thank you all for the replys.  they are just doing mri/mra  and now wants to do a speical CT.. something is going on for sure.  today  her puplis of her eyes got as big as the irris of her eye and she could not answer questions and we asked her what was wrong she said she didn't know and this lasted about 20 min or more.  and then she was ok and could answer questions.  they are still real big but she is responding.   this happens at least once a week.  they said her staring spells were seizures.. not sure what going on when her puplis get this big.  her eye sight on last exam was fine.  but since then is when they have told me the blood suplly in back of head was narrowing.  I will ask a lot more questions next time i see her neruologist or her neurosurgen.  thank you all. appriciate the support.

thank you so much!!

ok, I am really confused here! Do I understand this correctly, that even if your child has surgery on both sides of his head, this will not correct the arteries in the rear of the brain (if they are also narrowing)?

My son has the Pial Synangiosis surgery in June. Don't know yet if a new blood supply has grown. But at his initial diagnosis I was told he also had a problem with the arteries at the back/base of head. Drs. who performed the surgery never mentioned these arteries and I just assumed the surgery corrected all vessels that were narrowing.

when I was told she had moyamoya they told me it was the left and right coraided (sorry on spelling) atteries in the neck area going into the brain that was affected.  they did EDAS surgeries on her and took the temple veins and sewed them into the brain.   when she had her scan on the 3rd then we saw the new neurosurgen on the 4th.. he said the moyamoya was getting worse and now the back of the brain atteries were starting to narrow down and close off that they want more scans to get more looks at it and they will keep an eye on it.  I honestly have no clue.  I thought the surgeirs she had would take care of it but now they are saying with the back atteries affected  she may need more surgery they will just keep an eye on it  and then said  that if they do close off she will go blind in her side vision in both eyes as these atteries provide blood supply to the vision area of the brain.

When my son was diagnosed with moyamoya in January I read and read and read everything I could find.  I read here and there about the disease affecting the posterior arteries.  I wish I had saved some of those links because now I am having a hard time finding much now.  Here is a link that mentions it though, saying that it is rare.  http://www.nejm.org/doi/full/10.1056/NEJMra0804622

This article is longer but gets into it with more detail.  http://stroke.ahajournals.org/content/33/6/1497.full  I recommend reading it.

Here's a youtube video I also found helpful to explain the anterior/posterior arteries in the brain.  http://www.youtube.com/watch?v=QnuzlUTOl24

We haven't had the possibility of the posterior vessels being involved presented to us by the doctor either.

Sherry are you on any type of cholesterol medication?  My husband takes one to keep his under control.  Are they allowed with MM?

yes the blood vessle in the back of the brain are now starting to narrow down. the front ones are still closeing too.  her regurlar neuro called today and said  (Beth's neuro just called she looked at her MRI and she said yes the moyamoya is getting alot worse and so she now has her taking plavix 1/2 tab and the asprin for 2 weeks then may start taking her of the asprin.. waiting on them to schedule a CTA...praying they get it the same day glo has her MRI it will make it so much easier...) so we are now waiting some more.   Beth is 17  she was 16 when it started happening. 

my daughter's regular neuro called and said   she looked at her MRI and she said yes the moyamoya is getting alot worse and so she now has her taking plavix 1/2 tab and the asprin for 2 weeks then may start taking her of the asprin.. waiting on them to schedule a CTA... i asked them to try to get it scheduled for next week as i have to be in little rock with my other daughter having a mra that day anyway and it would be easier .. little rock is 4 hours away from me and no one helps me with gas and i can't afford the gas several times a month to go back and forth.   to little rock