Ok, so I know my surgery seems to have gone well, and I live every day as a lucky survivor of MM.  I've had migraine headaches since the age of 4, and was diagnosed with MM in August 2008 with stroke-like symptoms.  Had pial synangiosis on both sides, 8 days apart, right before Christmas.  My 6-month checkup said I had no further brain injury, with no collaterals forming from the surgery site, and that the MM continues to progress.  My first post-op angiogram is now scheduled for 12/14.  But I'm afraid.  Sure, everything seems to be ok and my reflexes and memory have gotten better.  But I hate hearing that the MM continues to progress.  They couldn't tell me anything else after the 6-month checkup.  What if they say it's getting worse?  I live a normal life and work normally, have fun with my friends and have an otherwise super life...but I'm still concerned that every day is just one less day that I'm around.  Does anyone else feel this way? 

I don't mean to sound depressing, because I know in my heart I'm better off than I was before, and that surgery is definitely the way to go...I'm just wondering how to ditch this feeling of being constantly worried about this disease in the back of my mind.  Any suggestions would be helpful! 

Judy

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

Pial synangiosis is indirect bypass, right? It's quite possible that during the period that the arteries are growing together post surgery (up to 6 months+), the moyamoya will appear to progress because the benefits of the surgery haven't kicked in yet. Only once the new blood flow starts, I would imagine the moyamoya should come under control.

I don't have the disease, my daughter does, so I'm not going to pretend I know what it feels like to have this going on in my head. But not a day goes by that I don't feel fear. Fear that I get that dreaded phone call at work, fear that we're woken up in the middle of the night with another episode, etc. I don't know how I would survive without her. If I could I would take the moyamoya myself instead of her. I guess what I'm trying to say is that you're not alone, all of us are afraid.

I think knowledge is a great way to combat fear, knowledge of moyamoya and of your body.

Stay strong
Mark (Luca's Dad)

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

This thread has really touched my heart.  My daughter had her two surgeries at age 17.  Five plus years later, I stand by even more what I've told many patients and their families - that there isn't enough credit given to the emotional  road moyamoya and its subsequent treatment, recovery, etc. takes us on. 

Scared?  You bet.  The previous posts come from both a patient and parents of patients.  We've all done what we could to make our lives and the lives of those we love more secure.  As parents, I think we're unanimous in the fact that we would have much preferred it be us instead of our child.  The heartache of watching a child in pain or at risk is indescribable.  My feeling is that life will never be quite as carefree as it was pre-diagnosis, but it does get better with time.  Each each month, each year, each milestone is a triumph, and we all try to resume "normalcy" in our lives.

As I stated earlier, I think the emotional aspect of all of this is hugely understated.  There are many (both patients and family members) who may need professional support/counseling to cope with the turmoil they've been through.  I strongly encourage this, and hope that people aren't afraid to reach out when/if they think it's time.

O.K., need to go dry my tears and get back to work.

[smiley=heart.gif] to my MM family,
Jill         

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!

I to am scared i try to tell myself that when i go back to stanford for my 6mth checkup and if they tell me everything looks good them maybe i can start to breath and relax again and not worry about every little feeling and twinge that i feel and just realize that i will just feel this way and be happy that im still here and able to watch my kids grow up that is my biggest fear of not seeing them grow up
Darci

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

Judy,
I agree with everything that has been said so far. I have a party on the day of my surgery. My husband and our friends and family celibreate the starting of my "life". Kind of like a second birthday but with out the presents. We tend to go out to a nice dinner. Keep the positive spin going. There are still time when the darkness want to creap in but don't let it. What doesn't kill us makes us stronger!
BIG HUGS!!!!
Becky

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.

Judy,  I have MM. Had 2 strokes. Had surgery in 2000.

Your subject: “Anyone Afraid?”—A resounding Yes.

Your question: “I'm still concerned that every day is just one less day that I'm around.  Does anyone else feel this way?” – A resounding Yes I do.

Your request: “I'm just wondering how to ditch this feeling of being constantly worried about this disease in the back of my mind.  Any suggestions would be helpful!” – A resounding I don’t know.

One recurring experience I have with this situation is the tendency for people to try to convince you how lucky you are. I appreciate the good will but after awhile it starts to sound like platitudes. I would like someone to say,  “ I’m sorry you’re sick” and leave it at that. Over time I realized that this is the truth to the matter. There is no follow up to that fact.  I’m sick. I have since met a few people who, not knowing  my condition, revealed that they are sick. I have been careful to only respond with” I’m sorry for that”.  I’ve noticed that this simple statement tends to open the door with them.  I then just listen and hope that my attentive silence in some way helps them.  I hope this reply helps someone else.  I  am sincerely sorry you’re sick. 

Russ

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

Jennifer,

Considering your young daughter is headed for a second surgery and you have unanswered questions, you have a positive attitude.

After I was diagnosed with Kidney cancer and had a radical left nephrectomy and the doctor informed me it is not a question of "if" the cancer will return - it is a question of "when", I went through a period of "is it gone - is it back?" I was consumed with fear and became depressed. One day, I had enough of the constant worrying and finally resorted to the fact that I could get busy living or get busy dying. It was my choice to embrace life for everything it had to offer or continue to waller in misery and worry. I decided to turn my life positive and be a cancer awareness and cancer cure advocate. I vowed I would not let this disease control my life.

My attidude change took a while. It did not happen overnight. It took a while to come to grips with the entire ordeal. The longer I went cancer free, the easier it got for me to believe perhaps it is gone and just maybe, it won't come back or at least anytime soon. 

This experience taught me that we can't necessarily control what happens to us but we can control how we react. 

Stay strong and I will be thinking of you and your daughter on Thursday.

Keep us posted.

Lore

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

druss u know u are rite. my family is telline me the same thing, i am very luky and in  a i am but days are hard to live , i feel ur pain, and iam really sorry u are sick, i am
airin

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 Airin and Welcome to the MoyaMoya family.

I certainly understand your fear and it is only natural and especially since you have just recently been diagnosed with MM.

MM is a progressive narrowing and closing of the carotid arteries and requires surgical intervention to bypass the blockage and reduce the risk of stroke or hemorrhage.

My suggestion is to learn all you can about the disese and seek a professional opinion from a MM Specialist. The two MM specialist in the USA are Dr. Michael Scott at Boston and Dr. Gary Steinberg at Stanford.

Please know you are not alone and the MM family is here to suport you on your journey so please ask any questions.

Lore

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

Sorry I'm late to this topic but I can't allow myself to be afraid. My brother and I have Moya Moya, and he's a permanent resident at a nursing facility here after a major ischemic stroke two years ago, and I would be a basket case if I let fear creep in to my brain, waiting for the big one to get me too.