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. 

  I'm so sorry your daughter has so many issues she's lliving with. Where did your daughter have surgery? Someone can correct me if I'm wrong but, the arteries affected by moyamoya are expected to worsen. My daughter's were just about closed at her one year check after surgery. BUT the surgery is to creat a new supply of blood flow in order to compinsate when this happens. The disease is progressive even after surgery. There is no cure but the surgery is the treatment. My daughter is 9 yrs post surgery and has had no new strokes. Follow up should be checking the new blood flow from the surgery. Did they say if her surgery was a succes as far as supplying new blood flow to the brian?
Mary Grace

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.

they said the surgeries on the front vaines was great.. and no new strokes.. but they said it the moyamoya was getting worse that now the artires in the back of the brain were starting to narrow down and clsoe off and when they did she would lose the side vision in both eyes and possiable have more strokes.   he said the front vains were good now with the edas but that the back veines were starting to clsoe off

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)

I understand it the same way Mary Grace and the others do. I would send your infromation to Standford fo another opinion on if the EDAS was enough to supply the blood lfor properly. I will pray for her.
Hope you find your answer,
Becky

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.   

I have read about the arteries that supply the rear of the brain having the possibility of narrowing as well.  From the way I understand it it is quite rare---but, of course, so is moyamoya so if you have the arteries in the rear of the brain affected then you won the "bad lottery" twice.  Here is a link that refers to the occlusion in the posterior arteries. 
http://www.ncbi.nlm.nih.gov/pubmed/19145147
I hope you find some help for your daughter.  It sounds like she has had enough!

thank you so much!!

Lynn, very interesting... So, The new occlusion that mom2...is talking about are not the original arteries that were affected by MM but different ones that have become occluded. I hadn't thought about that possibility and that it could cause new strokes/TIA's. I know it is even more rare but I think it's something we shoudl be aware of in case of any new even very slight symptoms... Especially if our local ER/ Hosptial staff don't know much about MM.Thanks Lynn for that link...
Mary Grace

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.

It's my understanding that the surgeries provide alternate routes for the blood to flow into the brain. As long as the blood arrives there in sufficient amounts, it really doesn't matter what path it took. After my bypass surgeries, I was concerned about the progressive closure of some of my arteries. I was told that the bypass arteries would expand as needed to enable a larger quantity of blood to get through the graft and into the brain.
Kim

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. 

mom2nfautismaspergers+other,
I am sorry to hear your daughter is haveing a hard time. I think it might be best to send your infromation to Stanford. See what they think. Standford is the leading in MM resurch and corretive surgerys. I hope thing s get better and your find the answers you are looking for.
Becky

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. 

i am 43 i had a the same surgery 5 years ago and my arteries are closing but I have had no NEW strokes same as your daughter my neuro surgeon said give it 4 more years unless you have problems i dont want to wait until i have a massive stroke i already had one that damaged my brain i couldnt talk and now am on disabilty because its progressing at a rapid speed my arteries are almost fully clogged again but i have blood flowing thats the only thing i can hope for cant get my cholestrial under control either sorry your daughter is so young i had a stroke 7 or 8 years ago had the surgery 5or6 years ago now i am disable because of coagnative issues  :'(

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

Sherri,

Do you mean the new blood vessels are closing?


To mom2nfautismaspergers+other,

How old is your daughter?

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. 

I am so sorry to hear all she is going through. It is so scary to think this could happen. I am still very concerned and confused about all this. Makes me worry even more about my son.

My thoughts and prayers are with you n your daughter. Please keep us updated. 

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