Welcome aboard Ricangyrl!

We have quite a few members in Hawaii.
You can look at our members map and find them.
They will be able to give you information about the area and mearsures to take.

Kevin

Hi Ricangyrl, I'm sorry you had to find us, but glad you did This is a great place full of wonderful people ; They have certainly helped me more than I can say. Personally, my momma wasn't diagnosed until she was already an extreamly severe case, but if we would have been diagnosed correctly before she hemorraged, she probably never would have gotten to the "sever" status. Please do not wait! Get a second opinion as soon as possible from a specialist. In my opinion, waiting is dangerous! Please keep us posted on how everything goes and what you and your sister decide. Best of luck                                                 Nikki

Hi, 
I am new to this site and here is my story.  Does this story seem to be a trend or what!!!??  Some of you have already responded to me and I thank you!

My son is 28 and had a stroke on July 23rd of this year.  He did not have any lasting symptoms.  That started a barrage of tests which led to a neuro in Ft. Walton, FL.   The surgeon, suspected MM, because he was stationed in Japan and saw it alot, but is not qualified, by his own admittance, to treat it.  He sent my son to UA Birmingham Medical Center where he saw a Neurosurgeon who did an angiogram and diagnosed MM.  My son just went back this week for a special MRI that measures blood flow.  His bloodflow is normal, and the veins his body has made to make up for the 100% blocked ones are very strong in the NS's opinion.  So he is saying wait until symptoms get worse, even though he has never done an MM surgery.  Needless to say we are seeking 2nd and 3rd opinion and fast!!  We have DVD's of angiogram, CTA, and recent MRI.  I read that Dr. Steinberg in LA will look at them at no charge and give a determination.  Dr. Lewis at UFL Gainesville, FL will look at written reports of the tests at no charge.  That is where we are at this point.  Any tips, info or suggestions are greatly appreciated!!
Marguerite

Thanks Deb.  The CD's are on the way to Stanford.  They will be there Monday AM.  The other written information will be faxed to Dr. Lewis on Monday, so we should know something soon.  Hopefully before Thanksgiving so we can start making plans. 
Marguerite

to anyone who can try to help us answer some questions we are having concerning mm,                               our mother was recently diagnosed with mm and we have a million questions and have not received very much information from anyone yet . this diagnosis is recent and our family is trying to find out more information , this has really upset our mother and our family as well . she went for her angeogram yesterday and we are awaiting the results, this is a  very difficult wait for us and any information would be very much appreciated. thank you                             the family of dallen

Rachel and Marguerite,

I know how overwhelming a diagnosis of moyamoya can be. My brother Kevin (Cubbie) has moyamoya and went undiagnosed and misdiagnosed for 4 years. He had a significant stroke and multiple TIA's. When we finally received a diagnosis of MM and all doctors sent Kevin home to live out whatever life he had left, I got busy and started researching the disease.

The doctors said Kevin had enough blood flow and for that reason, could wait to have surgery. Even Kevin's internist, who was unfamilar with MM said Kevin didn't have much blood flow reserve. Even he said something had to be done. By the time Kevin got to Stanford for surgery, his blood flow was negative 2 on one side and only plus 15 on the right. His speech was worsening and his balance was way off to the point he fell in the garage and walked into objects. It didn't take rocket science to know Kevin was brewing for another major stroke. To make a long story short, I found this wonderful site. That was after I had telephoned multiple institutions who didn't even know what MM is. After I discovered this site, I first read about the different surgical procedures, the different testing and the anesthesia. I located Dr. Steinberg at Stanford through this site and sent Kevin's film to him. I felt if anyone could or would help Kevin it would be a MM specialist. I received a return telephone call in a couple of days. Kevin had two direct bypasses (STA-MCA) at Stanford in May of this year. Had he not had surgery, based on his condition at the time, he would most likely not be with us today. I realize every MM situation is different and I am not a doctor but one thing I have learned is to read about the disease and listen and learn from others with MM.

Many MMers have the same or similar symptoms. Some MMers are more fortunate than others as they were diagnosed early and got treated in a timely manner. Others were less fortunate and some went misdiagnosed and/or undiagnosed and experienced dibilating symptoms like Kevin. Each case is different but they all have common threads.

If you have any questions, please feel free to ask them.  We are here to support you and your families through this journey. Like DJ mentioned, there are 600 people who have been on the MM journey that come to this site and chances are, they have experienced the same things you and your families are experiencing and will gladly assist you anyway they can.

Please know you and your families are in my thoughts and prayers.

Lore