Hi Judy and welcome to the mm family. I can't speak for the others but I also have those days. I look at it as having not one less day but gaining one day that I survive this. It sounds like you have alot of support and friends. I had surgery in 2003. All I can say is to live one day at a time and live it to the fullest.

Hi Judy,

I think that Mark has defined perfectly how we feel...,  all the parents of children with MM ...., is exactly as he described it, fear never dissapears, but we must learn to live with it, and live and try to enjoy every time ....

All the best,

Paula

Hi! It has been a long time since I posted anything. That is because my daughter died from cancer in January. It was funny how our fear of the MM was put on the back burner and it was no longer in the forefront of her health concerns. We also feared that phone call or another trip to the emergency room from MM related situations.

Although, we constantly encouraged her. The one wish I have is that when she got out of the car to go to a dance or a party that I had smiled and praised God. Many times I cried from the sheer fear that something would happen and I wouldn't be able to save her from the MM and I prayed God would keep her safe. She is safe from suffering now, but I realize we have to count our blessings of the moment. It's hard but I would encourage everyone to try and hurdle the fear. I know for a fact that is easier said than done. God Bless!

Hi Judy,

It is only natural to have strong emotions and to be afraid and unsure about the future with a rare disease like MM and I admire you and am glad you have brought emotions to the forefront.

People deal with and react to having a disease in different ways and it is good to talk about fears and concerns because it helps to come to terms with the disease.

I agree with Jill in that there is not enough emphasis placed on the emotional side of such a diagnosis as MM. It's scary, it's the unknown and it's every emotion wrapped into one.

With this forum you don't have to go it alone. It's important to go through this together in a supportive environment where people understand. Even as a caregiver who is in it for the long haul, I found there isn't much support out there for us. That's why I am so thankful for my supportive friends, family and this site.

I think it is also important to keep in mind that despite the progressive nature of adult onset MM disease, after revascularization, it is considered uncommon to see a cerebrovascular event on the operated side after surgery.  There have been several studies of cerebrovascular events after revasularization surgery and none showed an event on the operated side. That said, there can always be that exception, simply because we are all different and this disease is rare and not a lot of information in large numbers exist and someone could have a co-morbid condition but I think it is important to keep it all in perspective - sometimes easier said than done.

It is safe to say for the most part, the long term outlook for patients with TREATED moyamoya seems to be good.

In my brothers case, I had to remind myself about how MM affects mostly the internal carotid artery. New circulation is restablished by bypassing them to replace circulation. Once I understood the surgery placed my brother on a level palying field in terms of having another cerebrovasular event, it helped me to not concentrate so much on that aspect of the disease.

My suggestion is to remember you are not alone and don't have to go it alone. That is why we are here, to support you with caring and compassionate understanding. It is therapuetic to be honest about what you're going through and to come together with other MMers. Not everyone can talk about it and that might be how they cope with it. On the other side of the coin, someone else may be feeling the same as you and want and need to talk about it and by you bringing emotions to the forefront helps another MM patient.

My Personal suggestions - give yourself a day off from thinking about MM. Have a therapy night. Mine would be pizza and/or chocolate with a splash of  wine. lol! But most importantly, remember you are not alone and you have your MM family to support you through this journey. 

Although my brother had difficulty earlier this year, once we got to Stanford and found that the bypasses were excellent meaning they took well, were intact and blood was flowing, it was a relief.  Again, it is the unknown. My brother's difficulties were soon remedied by raising his blood pressure but I must admit horrible things were going through my mind until my brother completed all his tests and we met with Dr. Steinberg and Teresa.

Judy, I hope this helps to ease your anxiety and I hope you find strength and hope in the many who have traveled the same MM road.

Lore

I also worry about my daughter.  she had surgery on the right side and I worry constantly, waiting for the left side to need surgery.  People ask me if she will be OK when the surgeries are done..."is she cured?"  I tell them that there isn't a cure but the surgery gets blood to the brain.  The next question is what happens to the Moyamoya vessels.  I don't really know how to answer that.  If there is no cure and she still has Moyamoya how can we NOT worry.  Has there been a study on the life expectancy of people who have had the surgery?  I hate to be morbid, I just want to understand more.  What happens to the mass of delicate vessels that make the appearance of the "puff of smoke"?  Just wish someone could give us concrete answers.  This may be the wrong topic to bring this up but reading it today just made me sad for my child and I want to understand what lies ahead of her.  Guess none of us can really know.  All I know is that my daughter is one of the bravest people I know.

My 6 y/o has MM.  She had her right side PS surgery on 10/5 and is scheduled to have the left side on 10/15.  I have all the same questions and emotions that hrsridermom does. 

I try to live each day as much in the present as possible, not to fear the future, but some days it is HARD.  Not many people can relate to the feeling of living with a ticking time bomb, which is what I likened our life to prior to surgery.

I don't know what life will hold for my daughter after her surgeries.  My hope for her is that she will lead a long, normal, healthy life....just what any parent wants for their child.

Best regards,

Jennifer

hi every one i just found out i have the moya moya. so what advice do u guys have for me

russan i am worried and scared that from another stoke i might become paralyaze. that is my fear. i am not afraid  of death but what to do about this feeling. when i get scared  i pray like crazy, god is the only one who geve this deasese and he can take it away so u know

Hi everyone,

Thanks so much for your posts.  It feels so much better knowing that everyone is experiencing the same feelings.  I definitely try to live every day to the fullest!  It's amazing how MM can change your perspective.

Thanks for the positive outlook and info on adults with MM...coming from other survivors and parents, this is definitely comforting.  And I definitely believe it does make us stronger, in numbers and in spirit, to go through this together. 

For anyone new to the MM family, please feel free also to communicate your thoughts, emotions, and questions...it definitely helps!

Judy