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!

Welcome to a wonderful family of MM survivors who are in many places on the spectrum of diagnosis to successful treatment.

All I can say is congratulations on your diligence to search for answers as well as your sister's!

I think that many of us would agree that the first opinion is not always the best one and you have to be your own advocate to get answers. There are wonderful specialists who deal with this everyday and you certainly have found one! Please feel free to ask questions along the way and know that you are not alone!!!!

Dr Steinberg will probably want to see your films and may even request an angiogram which is when they shoot dye through your carotid arteries and cerebral arteries in order to finalize diagnosis and to get an idea of the progression of the disease. He may also then recommend one of two types of surgeries in order to restore sufficient blood flow to the brain. One type would bypass the carotids (almost like a heart bypass) and the other would implant a vessel into the brain which would begin to grow and provide a sufficient route of blood flow to the brain.
We are also in the throws of diagnosis right now with my 7 year old daughter, and for as painful and confusing as it is...I feel like this website and these wonderful folks are a Godsend!!!

Take care and Godspeed!!!

Stephanie

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-

I want to also welcome you to this wonderful MM family.  It was a God-send to us last August when out daughter was tentatively diagnosed with MM.  We found Dr. Steinberg on this wesite, contacted him, sent him Kate's films, and the rest is history !  Dr. S operated on Kate Sept. 7, '05 and Sept. 13, '05.  She is doing so well now and is back in school at Oklahoma State University.  

I am so glad you are getting a second opinion and not waiting.  Kate had had 3 strokes, but they were very minor and have had no lasting damage.  We are so very blessed.

Keep in touch.

Hugs,

Cass in Texas

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 Ray,

E komo mai!  "Welcome!"  I am so glad that your sister found us!  You have come to the right place.  You are definitely NOT alone.  This "rare" disease has affected many of us here in the islands.  In fact, I would like to invite you to join our Hawaii Moyamoya Ohana.  We're planning to meet next month on Oahu.  There are others on the outer-islands who cannot make it, so I can email you what was discussed at our gathering and send you any pics.  My goal is to get a newsletter started very soon.  ;)  Please email me at islandmoyamoya@yahoo.com, and I can get you in touch with others.  In fact, I have met another MM patient from Maui who was a previous patient of Dr. Steinberg. It would be great for you to meet with her too.  

Ray, I just want to be sure that you seek the very best.  As you know, many here may not be too familiar with this disease.  Another MM patient, Annie, who is a Kaiser patient is still having much difficulties being treated for her MM and is at her wit's end.  Please, please, please, seek additional opinions!  I may sound like a broken record, but it wasn't until my THIRD opinion that I was properly diagnosed! I too was just being treated with medications alone from my first 2 opinions.  And trust me, they are well respected neurologists here on Oahu!  It's just lack of knowlege of this disease.  

I truly feel there may be many more of us here that go untreated.  I did interviews on the 6 o'clock news on KHON (FOX) and KITV (ABC), and that's how I met other MM patients here in Hawaii.  I wanted others like me to know there IS help out there...even if we have to travel out-of-state.  I personally traveled to North Carolina.

Well, I hope to hear from you...and again, welcome!  This is site is a God-send!  DJ is truly a blessing to us all!

Aloha,
Shan

p.s.  Thanks Moira for thinking of me and Jan.  We are definitely here for Ray and his family!  Hugs to you![smiley=hug.gif]

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 Rayann,

I PM'd you with more information.  When you're on Oahu, please feel free to give me a call.  In fact, if you PM me your appt date, I will try to schedule our gathering during that time.  ;)

Once again, welcome!  I'm so glad you found us!

Me Ke Aloha Pumehana,
Shan

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  my name is Tom and I'm from NJ.   Your fears and feelings are quite normal and understandable.  I was diagnosed in 2002 after a major stroke but most people on this site never experience a major stroke if they follow the proper treatment path and it sounds like you are doing just that.  By the way strokes really SUCK but they're usually not the end of the world.  I have recovered quite well.
    Get your scans and reports over to Dr. Steinberg (he's super) and he will put your mind at ease and take good care of you.

    You have joined a wonderful supportive and knowlegable family.  Most of us on this site know far more about moyamoya than the average doctor.
   One of our best experts on this site is right from Hawaii.   If you haven't heard from Shan yet you will soon.

So take care Ray  I know you'll be OK and you're in all of our thoughts and prayers.


Tom G.

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,    [smiley=hug.gif]

Aloha pumehana,
Jan

Hello ,  

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

Dear James,

Welcome to the site, and our MM family.  I am sorry you had to find us, but you're in the right place for alot of information, support and encouragement.

It sounds like you're starting to read up about MM.  This is very important, as you will find that there may be different recommendations about your granddaughter's care.  With proper education, you will be in the best position to help your family make decisions about what's right for her.  Secondly, the best thing you can do for her is to get her to a MM specialist - someone who sees it on a DAILY basis.  You will find many doctors who know the name"moyamoya", but just a handful of them have seen and treated it frequently.

You asked about Dr. Steinberg.  He is a top-notch MM specialist who performs surgery on both pediatric and adult patients (he's done about 300).  From my personal experience (details below),  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).  Another doctor with a great deal of familiarity with MM is Dr. Scott at Boston Children's Hospital.  He is primarily a pediatric neurosurgeon, and I've heard wonderful things about him.  There are people on this site who will speak of their experiences with both doctors.

Before I go any further, please let me introduce myself.  I am the mom of an 18 year old girl who was diagnosed in 5/04 and had her surgeries in 6/04, at the age of 17.  She had been diagnosed with migraines at age 6, and now in hindsight, we consider ourselves very lucky that she didn't have a major stroke prior to getting the "real" diagnosis.  Fortunately, we were referred to Dr. Steinberg.  Tara's surgeries were successful, and now you would never know she'd had surgery!  
 
I know for a fact that Dr. Steinberg will provide an opinion based on test results/scans free of charge.  I'm sure Dr. Scott will as well, but I'm not sure if he charges for his opinion.

Good luck to you as you sort this all out and decide how best to proceed.  Please don't hesitate to ask questions here!  Everyone is willing to offer advice based on their knowledge and personal experience, and you'll find a great deal of support as well.  Keep us posted . . . you and you precious little granddaughter will be added to my prayers.

Warmly,
Jill

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

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.

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 James-

Like Mar said it is hard to say what to expect because all of us have very different situations but we are here to help you and your family through. The most important thing is talking to a moyamoya specialist about your granddaughters case asap. I also saw Dr. Steinberg who in my opinion is the nicest and best MM doctor. When i was first diagnosed it was hard to believe and very scary but with the help of my MM family and a wonderful doctor I got through and now looking forward to celebrating two years since my surgeries!

You and your family will be in my thoughts!

Christy

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

Hi Ray,

Welcome to our MM family!

I’d like to clarify something because of what was just implied by Shan in the previous post. First, the majority of active members here do not advise any new members to seek an opinion from any specific surgeon based solely on our own personal preference, but rather for their MMD experience. We certainly all have our own opinions, and you can take it for what it’s worth, but bottom line, our advice is always with your best interest in mind, that’s our main concern.

It was implied in the previous post that one of the leading experts in MMD, Dr. Steinberg, is less than another, that's just her opinion and absolutely not accurate, nor is it in your best interest. We advise new members to seek Dr. Steinberg’s opinion because of his vast experience with Moyamoya the disease and his remarkable success in the hundreds of cases he’s dealt with and the many differnt surgical options he's performed for MMD. There are without a doubt, many brilliant neurosurgeons out there, but in all my research I have yet to find a doctor that can match his success, experience, and research dealing with MMD. These are facts Ray, and Dr. Steinberg’s credentials speak for themselves and I wanted you to have the facts and not just opinions.

As Jenny said in her post, "Finding the right specialist makes all the difference in the world!" We'll be here to support you along the way wherever your MM journey takes you.

You're in our thoughts and prayers.

Mar

Quote:

"I’d like to clarify something because of what was just implied by Shan in the previous post...."  "It was implied in the previous post that one of the leading experts in MMD, Dr. Steinberg, is less than another, that's just her opinion and absolutely not accurate, nor is it in your best interests."

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  [smiley=heart.gif]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!  [smiley=hug.gif]

Take care,
Shan   [smiley=hug.gif]

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.  [smiley=hug.gif]  Let us work together as one team...

I will add that it is also very important that you feel comfortable with the neurosurgeon that is basically going to save your life, and because this is such a great shock for you to discover that you have this disease at this time, it would be reassuring to talk to other people who have had surgeries done by a particular doctor, as well as getting other opinions, so, to this point, personal recommendations do go a long way. It's just a matter of getting as much information as you can on all the options available to you.
Moira