hello to you all,
my name is kim and i have a son who was diagnosed with moya moya a few years ago. i so hate this disease i really really do.... it was an incidental finding as he had a scan for his neurofibromitosis and they found a hamatoma which they were just watching and were not terribly concerned about, then a few years after that another doctor was looking at the scans who new about moya moya and she found that too.  it turned out it had been there all along since his first scan but had been missed and they said though that it had been unchanged.  well when he had a routine scan last july they found that one side had narrowed SLIGHTLY and commenced him on aspirin and his neurologist stated she didnt think he would need surgery but refered us to a neurosurgeon anyway.   well we saw the nuerosurgeon (who was absolutley lovely) and he decided that at this stage he doesnt need surgery and we will monitor it and he was commenced on aspirin.
the hard thing i find is am i living with a time bomb that could just go off at any minute or may it never go of at all.  surely if he was bad they would help him and do something about it. he is and has always been asymptomatic so i trust that that is a good sign... do you always get warning signs fist before anythng bad happens or can something just happen.... i am so mixed up... and the funny thing is i am a registered nurse and can access information but i know this sounds stupid am so scared to. my area of expertese at work is obstetrics and until my son was diagnosed with this i had never heard of it, neither had the doctors and nurses that i work with.
i wish i had of found this site a long time ago and if it is alright with you guys i will tell our specialists about it so they can pass it on to thier other patients as i think others could also benefiit.
how do i get through this, it is so scary and why cant it be me instead of my baby........ goodness me i sound like a fruit cake dont i..???
well he goes for his next scan on the 28th march so please keep him in your prayers....
all being well we are planning a trip to america for 5 weeks mid september through to the end of october... the doctor has given us his blessing saying go for it and enjoy that he does not see tyler having a problem with travel.
i forgot to ask the doctor though about hiking at high altitudes as we were planning on spending a day or 2 in yellowstone - can that affect his condition......
sorry to bombard you guys but i dont know where else to turn where someone actually understands or has some idea of what i am going through
love
kim

Hi Kim, Welcome to our MM family.  

I’m sorry to hear your son was diagnosed with MM, but thank God it was an incidental finding, many are not as fortunate and are diagnosed after progression and a stroke. Please don’t feel like you sound like anything other than a concerned, loving mom. We all understand your fears with this rare disease; we all have been down that same road one way or another.

I have to start by saying, a wait and see approach is risky, IMO. I don’t know your son’s specifics; I’m simply saying that this disease is progressive and delays in diagnoses/treatment are the particular pitfalls with MMD. I do NOT understand the wait and see approach with monitoring MM. What does monitoring and waiting do?? It allows the disease to progress and puts a patient at higher risk for a stroke. Unfortunately surgery is the only treatment for MMD. Medications/aspirin are helpful, but NO medications prevent the arterial narrowing process from progressing or keeps the moyamoya vessels from developing, and there lies the danger.

All MM cases are different because of each individual’s personal factors. The rate of progression varies from patient to patient, and warning signs are different for everyone, but to answer your question, can anything happen without any warning signs, yes it can. My niece simply said she could not hold a pen one day; no other signs, we never suspected a stroke and days later she had 4 devastating strokes that put her in a coma. I don’t want to frighten you; I’m simply saying that this disease can be silent and suddenly strike with mild or no symptoms as well as with stroke like symptoms. With children it’s hard to see every sign. I agree with the feeling it’s like living with a time bomb, because knowing MM progresses and that you can have a stroke at any time with this disease, that’s exactly like a time bomb. Is your son old enough to know and tell you about the many different warning signs possible?

IMO, the safest thing you can do is get a second opinion from a MM specialist. One who deals with this disease on a daily basis. If a MM expert says it’s safe to wait, then and only then would I wait while this disease progressed. We have two MM experts here in the USA that deals with this disease on a daily basis. If you mail either one of them a copy of your son's films, they will give you their expert opinion.

As far as travel and high altitudes, I would think that a doctor that’s experienced with MM, and knows your son’s specifics could best answer that. Again, each case is different with MM. No two cases are alike, so it’s hard to speculate.

Please don’t feel like you bombarded us at all. That’s what we’re here for, to help and support you in any way we can. There are wonderful people here, we’re like family. Please feel free to ask any question, no question is too small or to just vent.

You, your son and family are in my thoughts and prayers.

God bless,
Mar

hi guys,
thankyou for your replies, its very kind of you. my son is 11 and a great kid. we see the specialist in march. his name is dr mark dexter and yes he does have experience with moya moya and i believe he has a special interest in it too. i know he has been to the states with work so whether he has worked with your specialists over there i am not sure.  i am scared of the waiting game the more i read. but i guess that i will try to be positive in that my son is completely asymptomatic and in the 7 years i suppose it would be that he has had this there has been only a very marginal change.. and also looking at his scans his body or brain rather appear to have grown there own alterante pathways aswell. 
howeve i will speak to my husband (as i am completely computer iliterate) and as him to send the doctors that you recoment a copy of the scan (but do i send the last one from december or do i wait until the march one) and see what they say....
thanks again guys i really do appreciate all your help and support
love
kim....
p.s is there anyone else from australia in this forum

Hi Kim,
I live in Perth Western Australia and I was diagnosed in June 2001 and had 2 successful operations 6 months apart in 2001. Please PM me if you want any information - there are experts with MM all over Australia. Emily and Emma have both had surgery, as well as Patch (Helen) and a couple of others.
Moira

Skay wrote on Feb 17^th, 2007 at 10:00pm:

Hi Skay,

The cause of MM is unknown, but because it tends to run in families, researchers think that MMD may be the result of inherited genetic abnormalities.

Mar