My name is Michelle and my sister Terra called me and told me to check out the site and see what everyone was writting in response to our mother.  Our mother has had moya moya since she was 28 years old and they the dr. have told her that if she had the surgery chances are she would have a stroke on the operating table and not make.  So for the past 14yrs we thought that surgery was not even an option.  Now after hearing everyones stories i'm wondering if maybe the dr. said that bc that didn't know as much about moya moya back then as they do now. But the question is do we bring it up and ask our mom knowing that either they'll say yeah she can have the surgery and her not get better and her be sad bc of it or what if she does get it and not make it out. Does anyone have the actual statistics of the success rate with the surgery?  We love our mom sooo much and if there really is a chance that we could really one day sit down and actual have a conversation with our mom... wow it makes me cry to just think about it.  But without knowing the statistics and with what the dr said about not making it through the surgery the option just doesn't seem like a realistic one to me it seems too risky.  Has anyone else ever been told that and still had the surgery? 

Lost and Confused on the real severity of the options

My mom is currently living with her sister who has guardianship of her,so really the choice is up to her..But the thing is about 5 years ago when she lived with me ,I brought up the ideal about the surgery to my family and everyone was 100% against it..A few of my aunts told me they would even fight me in court over it..At that time I really didn't know much about the surgery except that it could save her life and actually stop the strokes..I spoke with my sister last night and told her to check out this site.I told her about the surgery and I think she is about as confused as I am..Right now we are trying to get as much info about MM and the surgery b/4 we even think about bringing it back up.
  Right now my mom has no life at all,and just the ideal knowing that w/o the surgery most likely she will die,but with it she actually might have a chance to lead a half way normal life! I know the surgery isn't gonna cure the damage already done from all the strokes,but maybe with time and rehab. she could regain some part of her life back! I'm so glad I found this site 

Not just 14 years ago were patients being told surgery was not an option, still to this day many doctors in the medical community are still saying not to have surgery because it is too risky or they say, let’s “wait and see” if you have another stroke. We now know this is NOT the path to take. This is a successfully treatable disease in most cases. They are not bad doctors, it’s just that they are not educated enough about MM “the disease itself”, which makes the "risk" more about their LACK of knowledge of MM, rather than an actual risk to the patient, and what’s important to know is, surgical management is the ONLY treatment for MMD.

We don’t know your Mom’s specifics to be able to say if surgery is best for her at this point or not, but we do know we see so many MM patients told the same exact thing as your Mom all the time, and yet when they sought a MM specialist or MM experienced neurosurgeon and their surgery was successful, they now live a better quality of life. We don’t know the damage your Mom suffered, but we do know that your Mom right now is not getting the proper blood supply to her brain, so therefore she will continue to decline, stroke or hemorrhage anyway without surgery. This is a progressive disease. So, the posts you read suggest getting a second opinion from a MM specialist, one who deals with this rare disease on a daily basis, for his expert opinion. What could you lose? It could only help you know in all good conscience whether you’re on the right tract or whether there is a chance at quality life for your Mom. It’s a call for a MM specialist to make, IMO.

Dr. Steinberg, a leading MM specialist from Stanford, CA., has done over 700 successful MM surgeries, with over a 95% success rate. If you could get your Mom’s most recent films and overnight them to him, then he would call you with his expert opinion. The only cost being the postage. No one is saying surgery, you’d simply be getting his expert opinion.

I can tell you about so many cases where MM patients were literally sent home to die with no hope, yet they sought a MM specialist and he did their surgeries when no one else would, and now you wouldn’t even know they had MM or brain surgery. It’s amazing what your brain can repair once you get the proper blood supply to it.

Lore gave you excellent advice and knows what she's talking about. Her brother was sent home to die. He was actually gray in color and looked like death, but she fought like none I ever saw before to get him to a MM specialist, and now when I see Kevin at the reunions, we have a beer together and it amazes me he’s alive and doing so good.

In my family’s case, my 20 year old niece suffered four massive strokes; she was in a coma, on a feeding tube, paralyzed, incontinent, etc and fighting for her life. Thank God I found this website. DJ told us to get a second opinion from Dr. Steinberg. So we overnighted a copy of her films (MRI/MRA & Angiogram) for his expert opinion, and he called us the very next day. He said she needed surgery immediately, she had a severe blockage on both sides of her brain, so we had her medically air lifted from Philly to CA and Dr. Steinberg saved her life. What did we have to lose; she was going to only get worse rather than better anyway. Sure, the strokes did permanent damage, don’t get me wrong, but she now can walk and talk, and lives a 100% better quality of life, now that the surgeries provided her with the proper oxygen and nutrients that her brain so desperately needed.

Anyone who has had successful surgeries had to fight to get that success in some way or another, due to the lack of MM experience out there. Remember you are dealing with a rare disease, so you need an experienced neurosurgeon for any chance of success. Your Mom can’t do it; she needs a proactive advocate to fight for her to even get that chance.

I will keep you all in my thoughts and prayers.

Mar