hello!my name is ray. i have been diagnosed with moyamoya on november 9 2005. i live on maui and never heard of this disease before. i was having seizures but didnt know what was happening to me until i went to the hospital. i went to oahu (kaiser)to take more test. the doctors said that i didnt need immediate surgery. so they sent me home to maui with seizure medication and told me to follow up with my doctor. while i was on oahu my sister ricangyrl found moyamoya on the internet. she kept in contact with several people and with dr. steinberg. i am in the process of sending my films to dr. steinberg for a second opinion. i do not want to wait until i have a stroke. my family are very worried and i am afraid of having a bad stroke. i have two children who is 11 and 4 and i really would like to see them grow. you can contact me with encouragement .

Hi, Ray.  Welcome to the group!   It sounds like you are doing a great job of being proactive about your health    Dr. Steinberg is a wonderful surgeon, with a very caring and competant team.  I can't think of anyone better for you to reach out to.

My daughter, Daphne, was diagnosed with MM about this time last year, and underwent two indirect bypass surgeries with Dr. Steinberg last  March... she was seventeen months old.   Unfortunately, she was not diagnosed until after she'd suffered two strokes.  Our local doctors told us that she would probably die within a couple of weeks, and that surgery wasn't an option for her.  However, like you, we did our own research and found Dr. Steinberg, and he felt that surgery WAS an option. 

To make a long story short, Daphne recovered well from both surgeries, and is doing better than ever now -- although she still has many physical challenges to overcome.

Finding the right specialist makes all the difference in the world!  We'll be here to support you along the way. 

Jenny

Hi Ray
Welcome to the site and congratulations about being diligant and following through with a second opinion.
There are a couple of wonderful people called Shan and Jan who both live on the islands and it may be a good idea to get in touch with them - Shan has had surgery, but I don't think Jan has.

Please keep us posted to the outcome of your tests
Moira

aloha shan! i would definiately want to know when the meeting will be. by the way my full name is rayann. i do hope i can make it to the meeting. thank you !

aloha shan! my appointment to see my doctor is here on maui. its on feb.7th 2006. please keep me in your prayers. everything is going good so far. i dont really know how much affect this disease has on me right now. i do have alot of questions for the doctors. so everything is blank for me right now. please keep thinking of me.



                                               much mahalo
                                                        rayann

Hi Ray,

You've come to the right place.  I sent an e-mail to you.  Your sister Rachel gave me your address.  I too am in the process of sending my reports and films to Dr. Steinberg and to Dr. Fukushima for their opinions.  I didn't feel comfortable on not knowing when or if something else is going to happen to me.  Your sister has contacted me via e-mail a few times.  If you ever have questions, please do not hesitate to ask.  I can't express how helpful and supportive everyone is. 

Just to let you know, Shan has been a great encouragement to me.  Especially since she's in Hawaii.  If you don't already know, I'm from Kauai.  I don't know of anyone on Kauai that has MM.  If anyone knows if there are others on Kauai that have MM I would like to  get to know them.  At least I won't feel so alone here.

Anyway this goes out to you, RayAnn,   

Aloha pumehana,
Jan

Sorry, I am new to this,   My grandaughter now 9 mths old was diagnosed with mm last november after she had many seizers, was  in the  hospital a week many tests.  The next day from getting home from hospital another seizer so put her on anti- seizer meds,  still on.   Just waiting to go back for another cat scan to see where she is at.  If you would not know she has mm you would never known it.  I see you all  to talking about a Dr. steinberg at what hospital is he at ???.  I dont know what to expect or what to do,  just wanted to see if anybody can tell me what to look for or what to expect.                                                                                                                                                                        thanks,
james

jconnor wrote on Jan 27^th, 2006 at 4:04pm:

Hi James,

Welcome to our MM family!

I wish I could tell you what to expect, but with MMD every case is different. Each MM patient has many different factors involved, but I can say, that in most every case you’re at risk for a possible stroke without the proper management. That’s where a MM expert is invaluable! Unfortunately, many doctors are not experienced with this rare disease. An expert, like Dr. Steinberg, has saved lives because he deals with MM on a daily basis. A great example is… there was a recently aired program on the Discovery health channel, about another MM family member, “Daphne”  A precious little baby who has MM as well. DJ has the downloadable video on this thread, if you’d care to see it. It may be helpful to you. You’ll get an idea of one little baby and the families experience with MMD.
http://www.moyamoya.com/cgi-bin/yabb/YaBB.cgi?board=news;action=display;num=1137005313

I believe seeking the opinion of a MM expert is the most important thing you can do, and next is, learn all you can about MM, because you’ll find many in the medical community know very little about it, and this way they can’t steer you in the wrong direction, as we see all too often when they’re not experienced with MM. This website has a lot of information here to help you, and of course we’re here to help and support you every step of the way. Feel free to ask us anything.

Please know that you, your granddaughter and your family are in our thoughts and prayers.

Please keep us posted.

Mar

Hi Rayann,

I just replied to your PM.   I want to put you in touch with other MM patients I've met here in Hawaii.  You'll be surprised that there are actually many of us here in the Islands!  I especially want you to meet a lady who used to be a patient of Dr. Steinberg and who has had 3 surgeries thus far from him.  Another patient flew to Boston for his surgery, but for the most part, many  here are choosing to make the trek to North Carolina.  Bottom line is that it is up to you to choose who you'd like to see.  (Financially speaking, California may be a lot cheaper if money is an issue.  However, I personally feel that money is not an option when saving your life is concerned.)  

I also want to let you know that there is actually a neurosurgeon here in the Islands that I do know of that does indirect procedures.  In fact, he operated on one of my high school classmates.  Once when he was a resident at USF and then another time at the Queen's Medical Center.  (She had both sides done).  I've also heard of another neurosurgeon that has a lot of experience with MM; however, he is or already transferred to the Mayo Clinic.

Please remember that you are NOT alone.  We are all here for you!  I am just so grateful that you're being assertive and pressing forward and getting expert opinions regarding this "rare" disease.

Aloha no,
Shan

Quote:


Mar,
I am getting de ja vu from a previous post in which we had our disagreement/misunderstanding about our different neurosugeons.  Please know that I would rather not re-live that as it was simply a misunderstanding, which I think this is as well.  

Please know that it was definitely not my intention to imply that Dr. Steinberg is "less than" any other MM expert.  In fact, I mentioned that I wanted to introduce Rayann to another one of his local patients here in the islands.  I felt the patient could share his/her experiences with Rayann.  I also felt that if Rayann decided to go to Stanford, she could provide her the necesssary information (travel, airline, etc..) which would help make her trip a little less stressful.

From meeting all of you here on this site, I do not doubt Dr. Steinberg's God given talents!  I've also come to know of others such as Shari's (& others) neurosurgeon, Dr. Scott in Boston, Tom's neurosurgeon, Dr. Connolly in New York, etc.  Trust me, I am just grateful that we are able to receive the necessary treatment and care of this so-called "rare" disease.  

In all honesty, unless we have the actual statistics from every neurosurgeon regarding the number of MM cases each neurosurgeon has completed, including the number of success rates, complications, etc., we will actually never know who is the #1 "top dog" MM expert.  To me this is not necessary at this point.  The bottom line is that we all have found neurosurgeons out there who were able to perform successful surgeries on us, whether in California, North Carolina, Australia, New York, Boston, etc., which is now giving us a new lease on life.  We will always hold close to our  s and believe that we owe our lives and are forever indebted to our own personal neurosurgeon and his/her team who saved our lives.

I believe that we had agreed in the past that we will always honor and hold high our neurosurgeon who gave us all another lease on life and respect that of each other...and especially not to put down any others.  

I've seen a recent post refering to Dr. Steinberg in this manner...

"it will be difficult to find a more knowledgeable, caring and brilliant neurosurgeon.  Dr. Steinberg is at Stanford in California, and patients come to him from all over the country (and world).  "

and if taken the wrong way, this too could've been seen as "putting down other MM experts."  However, I chose not to respond, as it was someone's opinion, and I respected that.

Please Mar, I don't want to stir up anything.  I'm hoping that you realize that those of us who are not patients of Dr. Steinberg don't have any ill or bad feelings towards him or any of his patients.  I've said it before...his patients here are a living testimony of his God-given talents and great works!  DJ, especially, is truly a blessing to us all!  

Take care,
Shan  

p.s.  When I post a comment, I sincerely do have other's best interests in mind.  I know how close I came to losing my life to this disease as did most of us...and by raising awareness and sharing this website with others, we can definitely help save more lives.    Let us work together as one team...