Wow, just reading your last post proves how much there is conflicting information about this disease!  The wonderful thing about this web site is that you are getting  information straight from people who have this disease and who have faced the unknown and the same questions..We can only give you our own situatons and outcomes.
Kathleen

JeepNerd,

I am going to approach your poll from a professional and analytical perspective.

I am an Analyst.  That is my title.  I analyze mounds of actual medical claims (doctor and hospital) data on a daily basis looking for a number of different conclusions/outcomes with specific parameters in place by first defining my research/analysis then develop and implement a sampling plan, test my measures and develop a design structure.

For any newcomer seeking factual information I cannot, in good conscience, not address the unreliable and incomplete conclusion validity of your poll as it relates to having revasularization surgery as a result of MoyaMoya disease or any condition/disease for that matter.   

The problem I have with your poll is that it is incomplete and unreliable information for what you are looking for in terms of revasularization surgery outcomes and my greatest concern, and what I don't want to see happen, is for your poll information to be incorrectly interpreted and someone like a newcomer seeking factual information come to a definitive conclusion about revacularization surgery based on the answers to your poll.

Misleading, unreliable and/or incomplete data can harm someone and when it comes to MoyaMoya disease, misleading data and the corresponding possible interpretation like with your poll that can be misinterpreted because the data lacks both conclusion and internal validity could harm a person to death, literally.

In this poll, the information could be interpreted to mean that people have complications after revascularization brain surgery as a result of MoyaMoya disease which is not validated in this poll.

For instance, if  a person states they have a headache after surgery what kind of headache is it and what is the cause?  Is it a sinus, allergy, tension, pressure headache or is the headache the result of a co-morbid condition such as diabetes, cancer, COPD etc. or perhaps a certain medication or medications or a combination of all? Even if this information is provided via this board what is the validation of the information?

Just because a person has a headache after surgery doesn't mean the headache is necessarily a direct result of having the surgery.  It could be something else or it maybe a result of the condition or disease causing the headache but not necessarily because one had revasularization surgery. There are many other variables and possibilities such as the anesthesia, as an example, or the amount of drugs or different drugs the individual is now taking or are not taking and it could even  be withdrawal symptoms as the result of a person no longer taking a certain medication or medications causing the headache.  Or even how an individual responds based on that indivduals' clincial state, physical and genetic makeup or something entirely unrelated plus possibly all or some of the previous possibilities mentioned.  Surgical outcomes for any surgery depend on a host of variables and can be different for everyone. There may or may not be an obvious trend or a validated outcome. 

Your poll will tell you whether or not someone had surgery or did'nt have surgery and nothing elsel. Are you listening?.......just checking.

There is a problem with the poll outcome information and conclusion validity of the information because it is lacking internal validity. I simply want it made clear that your poll outcome information is unreliable in terms of having revacularization surgery as a result of MoyaMoya disease so as to not mislead anyone coming to the board seeking factual information.

Lore      

Ok, I really have to say -- DJ, this is uncalled for.  This is a support board, isn't it?  There's no reason to call anyone, especially someone who is CLEARLY confused, an idiot.  He hasn't called anyone any names. 

Despite the clear thoughts that many on the board have presented, he's obviously not getting some of this, by posting inaccurate information (ie, the doc who said most Moyamoya patients in NA are female - I don't think that's true but that's my opinion - I don't think ANYONE knows the answer to this). 

I concede that's there's frustration.  But everyone handles it differently -- no one is the same on this board and there's no reason, in my opinion, to go call someone names just because we're frustrated that he's not fully hearing us.  Not to mention, everyone seems to focus on this poll - it's not just the poll.  If I could injecture here, I see his response as challenging the mere thoughts he's being presented elsewhere.  I read his last post as, despite what everyone is saying on this board, here's what I'm reading from a world reknown doctor.  We should respond with details, not anger.

So to that end, here's my detail:

Jeepnerd - a doctor can be the best doctor in the world.  But no doctor is perfect.  I had a well known doctor here in NY tell me I didn't need surgery (a doctor who has treated patients on this site, by the way).  He told me there are no studies proving that surgery works for moyamoya patients.  He insisted on this after three doctors (one being his mentor) disagreed with his decision.  When my brother asked him, how does he know if surgery is NOT an option if there are no studies?  He was silent.  Needless to say, it only affirmed my position. 

I hope this helps.  Please do more READING and less antagonizing on this board -- it will only help your situation. 

Best wishes,
Trina