hi all,
I do not post much but i always read. Is it possible there are 2 types of moyamoya? some people seem to be fine after surgery and others are never quite right  after surgery . I understand some have had strokes but you can take 2 people that have had  strokes and get completely different results. some can run and swim and work and others cant. some kids go back to school with no problem and some can barely attend if at all. It just seems to me that there might be a reason for this. are there any studies on anxiety panic or inability to handle stress. what about confusion and disiness during stress, head pounding and headache?? what about how the hospital experience effects people. My daughter and my sister have not been right since surgery. there are no answers. Surgeons feel after surgery all is fine. I am sorry to vent but why is it so different for people with the same disease. some people are disabled and others are fine. I just think we should all network and try to find some similarities and possible answers among us. Some think these problems are psychological and I think they might be damage or lack of oxygen to the under carrige of the brain??   Please do not take this wrong I am not  trying to seem ungrateful. I would just like to hear some of your expert opinions, maybe it will ease my mind. ;       
thank you all, Amiee molly's mom

Hi Amiee,

I don’t know anything about there being two types of MM, and my opinions are certainly not expert ones, but I do know that all MM cases are different because of the many different factors involved with each MM patient. Let’s think about just a few, but they’re endless really. Even though both your daughter and sister had surgery, they most likely had surgery at different stages of their disease, as it would be with many others as well. Do you know what I mean? Surgery at a different stage of the disease could mean the difference in many of the cases. Perhaps there was damage before the surgery that can’t be repaired. The surgery will get blood to the brain to help avoid a stroke, but like mlgohsman said, it won’t always repair the damage already done.

With MM, if your collaterals (MM vessels) are getting enough blood to the brain, then you can be completely symptom free, with no real problems to speak of for years, but yet you have MMD, a sneaky monster waiting to attack at any moment causing a stroke or hemorrhage, or headaches, cognitive issues, TIA’s, and many other problems, and it’s just waiting to harm any part of the brain at any moment. With some MM patients’ it strikes suddenly, and with others it works slowly, and deprives the brain of blood, oxygen and nutrients, and that can cause numerous problems. Surgery will replenish the blood flow, but it’s not a cure and won’t always heal the damage MM causes. Your surgeons feel all is fine after surgery because if successful, they did there job to avoid that deadly stroke that comes with this disease, and then the long-term outlook is good, without surgery, it isn’t.

There are also many different personal factors that will cause problems more so for one MM case than another, before and after surgery, like high blood pressure, blood clots, other conditions, etc. The surgery itself could be a factor as well. Was the surgical approach best suited for that specific case? That’s crucial for success. With children, they grow their own network of vessels to replenish the blood flow, but perhaps they have enough blood flow to help avoid a stroke, but they’re not getting enough blood flow everywhere the brain needs it, which could cause many different problems. The location where the brain is lacking the proper blood flow would be another factor and varies with each case.

I could go on all night with reasons why some people may seem fine after surgery and others are never quite right. There are just too many possible reasons and not enough known about this disease to have all the answers.

I don’t think you seem ungrateful, but rather want some answers, as we all do, but unfortunately they don’t know enough about this rare disease yet, but I pray every night for at least some, and soon!

I’m sorry if I didn’t ease your mind any, but hopefully it gave you some other ways to look at it. You’ll probably come up with a bunch of reasons yourself why some do better than others after surgery.

Keeping you and your family in my thoughts and prayers.

Mar

Thank you all so much for just being here, and taking the time to respond so compasionately to a stranger. We are all allright and they are both alive. My sister lives without the bone flap on one side of her brain. to my knowledge she is the only moyamoyaer to survive a MARSA staff infection of the brain. We should really warn all newbes to make everyone who enters the hospital room  and after wash their hands until all wounds are healed. you assume they are clean but you would be surprised. if you respond please mention this that is why we are all here, to try to prevent un-nessisary damage to others by this disease!!
again thank you,
Amiee