Dr. Steinberg is the premier Moyamoya specialist on the west coast.  Located at Stanford University in the San Francisco/San Jose area, he specializes in the STA-MCA surgery.  Dr. Steinberg does, however, also perform the EDAS, EMS, and other versions of surgery for Moyamoya.

Here is his contact info:
http://med.stanford.edu/profiles/Gary_Steinberg/

Dr. Steinberg saved my daughters life when other Dr's. told me to wait a year for surgery after 4 strokes. Thats what I mean by the difference between a neurosurgeon and being an excellent neurosurgeon thats a MM SPECIALIST. We overnighted films and within a day or two had a response that my daughter needed surgery. His Nurse and second hand Theresa is top notch you will not find anyone better than those two. They're bedside manner is great and they will answer as many questions as you can ask. Someone who gives seminars around the country ect, to other neurologist and neurosurgeons about MM I would think is just telling you he is # 1 at what he does. He continues to do studies and come up with new treatments for stroke victims and MM patience that have helped alot, unfortunately that cannot be said for hardly any other neurosurgeons. He just cannot be matched in my opinion, I would trust him with my own life and anyone in my families. He's the best!
                        Mandy and Nancy  :)

Mandy and Nancy,
We agree that Dr. Steinberg's office staff is very organized and efficient. We've talked to Theresa (wonderful nurse!), Margie and Bob as well. They're excellent! We also overnighted our son's films to them and we got a response the following day. This is extremely helpful, especially for out-of-state families. The Stanford people sound supportive. This is a stressful time and they've made it easier for our family to deal with it. We can't wait to meet Dr. Steinberg himself. Our son Sean will be seen on 08/09.
Gigi

Dr Steinberg did surgery on my Mom just a couple of weeks ago. She went down there for surgery on her left side, but while she was down there, they caught the early signs in her right side as well. He did both surgeries, which both were performed with flying colors. The surgery on the left side(the worse side with three 100% blocked arteries) went so well that he was able to increase the blood flow by 500% of what she had before. Unfortunately I was unable to meet him in person, but in my opinion the man is a God Send and a true miracle worker. I would recommend him to anyone.

I agree with everybody on this one.  Dr. Steinberg is an excellent, qualified neurosurgeon to perfome STA-MCA on anyone diagnosed with MM.  I had surgery for MM done in April and May of 2001 and also I had to redo the left side in September 2003.  I have now began my 4th year in college and am doing great.  Theresa, Lisa (no longer @ their dept.), Monica and the rest of the Neurology department are wonderful and very helpful. I must say, Theresa knows her stuff  :).  Although I'm from Maui, Hawaii, Dr. Steinberg and his staff were able to and still accomodate us as much as possible.  They truly are terrific.

Aloha- Mel

Can anyone tell me if Dr. Steinberg accepts medicaid?  I have Missouri Medicaid (Family Health Partners) and I was just diagnosed with MoyaMoya last Wednesday October 27, 2004.  I am 41, married and a mom to three girls 13, 12, and 10.  My
12 year old has Down Syndrome and my 10 year old is being treated for migraine headaches already so my concern is not only for myself but my children as well.  Can anyone recommend a doctor in the Kansas City area possibly?

I agree with all the great posts about Dr. Steinberg.   My daughter, Daphne, had indirect bypass surgeries this March (she was 17 months old) and has been recovering well.

Prior to that, she suffered two strokes this January, and our hospital told us that there was nothing more that could be done for her.   She was sent home under hospice care, and was expected to die.

I sent Daphne's studies to Dr. Steinberg's nurse as soon as we got home, and they were so wonderful!  They were back to us within days, telling us that they thought Daphne could benefit from surgery.  They scheduled her surgeries and all her testing within the same week.

Daphne is making great recovery from her strokes (still a long way to go), and has been a true fighter.   I credit Dr. Steinberg and his team with giving us hope at a time when no one else beleived in Daphne, and giving our daughter a real chance at life.   I will always love them for it :)

Jenny

Dr. Steinberg recently performed STA-MCA surgery on me.  At every step of the way, I had 100% confidence in Dr. Steinberg, Teresa and the staff at Stanford; it was comforting to know "Moya Moya" was a familiar diagnosis with everyone I talked to at the Hospital.  It was wonderful not feeling like I had such a "rare" disease.   I trusted Dr. Steinberg's experience and expertise with Moya Moya to the point I was more concerned with management of post-op nausea than the surgery itself (which, thankfully, turned out to be my biggest challenge of surgery).   Not only is Dr. Steinberg an excellent vascular neurosurgeon who knows Moya Moya well, he has excellent bedside manner.  

15 minutes after my wife called me that my 14 year old daughter had Moyamoya I found this website and knew that Dr. Steinberg was the only doctor that I wanted . To make a long story short , everything that has been written about him and the staff at Stanford University Hospital is true . My daughter Shannon had her surgeries on May 9 and 16, 2006 and I thank God and the skill of Dr. Steinberg for saving my daughter. Although it was stressful, it was an incredible experience to see such wonderful professionals do their job so effeciently !

thanks Hawaii and all the others who posted here,

I am currently actively involved in considering Dr Steinburg for my bilateral STA-MCA surgeries in the next coming weeks.

It is comforting to hear all these reviews!

Any difficulty with your insurance company for the out-of -state surgery? I will be making the phone calls to the insurance as of tomorrow.

warm wishes....diane : )

Just an update......

I had my direct bypass surgeries on 8/25/06 and 8/29/06 at Stanford with Dr Steinburg and his wonderful team.

Everything went extremely well surgically speaking....no bumps in the road at all.

The Stanford team tries hard to add the personal touch and I greatly appreciated all the sincere care they gave me.   A+ on everything!!!!

hey....I have blood flow now  : )

smiles....diane

dr. steinberg treated wyrik's moyamoya. He is fine. there were no side effects the surgery was on 9/16/08 there were no problems he was out in 2 1/2 days

My name is Jim and my girlfriend Samantha was diagnosed in Dec. 2008. After getting out of the hospital she was doing well on baby aspirin for a while but then the other side of her body started to be affected.  The neurologist switched her to another medicine and told her to come back in 4-6 weeks.  Well it's been just two weeks and the TIA's seem to be coming with greater frequency and they're happening on both sides.  The doctors are fine and all and I'm sure they're great doctors in their own rite but I they just don't have the experience with the disease and they just don't seem to have the sense of urgency I'd like to see when dealing with such an important thing. We've got two little children that need their momma.  
So I guess my point here is I'm glad to be a part of this site.  It has been extremely helpful and I'd really appreciate some help if I could.  What I'd like if possible is info on how to contact Dr. Steinberg by email if possible and what exactly to expect when we contact him.  Is there anything else we should have ready to send him besides her medical records.  Any ifo would be great.  Thank you all so much to everyone

Hi,

You can e-mail directly Dr. Steinberg’s nurse, Teresa (teresab@stanford.edu), copying him (gsteinberg@stanford.edu) if you prefer. If you explain them your situation, they will probably ask you to send them all the images you have (MRI, arteriogram, etc…). You will be surprised about their quick answer!! They did it on our case (Teresa answered me in a few hours ….), and I really appreciated it …

giznot wrote on May 12^th, 2009 at 4:27am:

My name is Jim and my girlfriend Samantha was diagnosed in Dec. 2008. After getting out of the hospital she was doing well on baby aspirin for a while but then the other side of her body started to be affected.  The neurologist switched her to another medicine and told her to come back in 4-6 weeks.  Well it's been just two weeks and the TIA's seem to be coming with greater frequency and they're happening on both sides.  The doctors are fine and all and I'm sure they're great doctors in their own rite but I they just don't have the experience with the disease and they just don't seem to have the sense of urgency I'd like to see when dealing with such an important thing. We've got two little children that need their momma.   So I guess my point here is I'm glad to be a part of this site.  It has been extremely helpful and I'd really appreciate some help if I could.  What I'd like if possible is info on how to contact Dr. Steinberg by email if possible and what exactly to expect when we contact him.  Is there anything else we should have ready to send him besides her medical records.  Any ifo would be great.  Thank you all so much to everyone

Hey giznot

I'm sorry to hear about your girlfriend, but you are without doubt at the right place. This forum is active and full of people more than willing to help.

Do us a favour and start a new thread for your wife under the "Moyamoya Related Information and Support" section (http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?board=news). That way it will get maximum exposure and won't get confused with other peoples stories on this thread.

Just to answer your question for now, all the doctors listed on this site, including Dr Steinberg, will gladly take whatever information you send them and give an opinion. The more info the better, but to start with you'll need your doctors reports aswell as scans/films of your girlfriends brain and vessels. These are normally in the form of MRI or MRA or brain angiograms with dye (This last option is the best). If she's had any, or all, of these done, request copies from your neurologist on disk and get them to Dr Steinberg ASAP.

Good luck and keep us updated
Mark (Luca's Dad)

Hi Jim, Welcome to our MM family.

I have to say first, that you’re very wise sensing the urgency with MMD. We know a stroke or hemorrhage is coming with this disease, we just don’t know when it will be, so when a doctor doesn’t aggressively treat a case with warning signs such as Samantha’s, to try and avoid that stroke/hemorrhage, it’s usually because they do not have enough experience with this dangerous, rare disease. This is a PROGRESSIVE disease, and NO medications stop the arterial “narrowing” process from progressing or the MM vessels from developing. There’s the danger! So, you are absolutely right; IMO, to approach this aggressively, and you’re on the right track getting a second opinion from a MM specialist, then you’d know exactly where you stand and the best path to take for Samantha’s case.

As I understand it, Paula is correct, the quickest way to get in touch with Dr. Steinberg, is to contact Teresa, his right hand man, so to speak. Her email is:  teresa@stanford.edu
Contact her ASAP. She’ll tell you everything you need to know and what to send and where to send it. She knows this disease and what it’s capable of. Stanford, IMO, has the best MM program currently in place anywhere, and is one of the largest moyamoya referral centers in the world.

Anyone I know who’s had successful surgery before a serious debilitating stroke, has been aggressive in their care and fought in some way to get that proper care. I can only commend you for learning all you can and taking an active and aggressive approach. Continue to learn all you can. Knowledge is power when dealing with a rare disease. It may save her life.

Feel free to ask any questions. We’re like family here. We’re with you every step of the way! You’re not alone.

My prayers are with you both.

Mar

Thank all of you for your replies and thanx Mark I took your advice to make a new topic for Samantha.  I'm e-mailing her info to the Dr's office as we speak.  Once again bless you all for your support.  This site is the only place I've found that we can actually talk to people who know what the heck we're talking about.  I will keep you all informed and everyone is in our prayers as well.

Dr stinebergs office is awsome ! i live on the west cost due to fly to CA  in two weeks for two sugerys on on dec 22nd and the othe jan 5th. they looked over my imiging results and within a day called me back and said that they wanted me out there for sugery. they were able to Answer all my questionsover the phone ! ( mind you the doctors here in albany new york STILL dont know whats going on with me)

Hi Rachel, [smiley=wave.gif] Welcome to our MM family!

I agree--they’re wonderful at Stanford. You’ll be in great hands. They sure know their stuff, and Dr. Steinberg is a genius.

You’ll be in our thoughts and prayers every step of the way. [smiley=hug.gif]

Mar

Hello there fellow MM'ers.  Rachel, looks like you and I might cross paths in Stanford.  I agree, the folks at Stanford are amazing, I was looking at Mayo Clinic but changed my mind.  My first bout of tests start on Jan 6th, with surgery on the 12th, and 19th.  Actually, I was going to schedule on your dates, but didnt want to stay for Xmas. For some reason, I'm more nervous about the tests than anything.  I'm a big guy, MRI's and I just don't get along.  Anyway, looks like you're flying, what are you doing for housing.  I live in PA and I'm looking at subleting an apartment for the whole month.  Also, somebody is supposed to contact me about Stanford housing but we'll see. 

Jason

I too have to agree with those that have seen the excellence of Dr. Steinberg and his staff. I am a 38 yo female that was diagnosed with MM in 2006. I went to Stanford medical center in May 2009 and also went through a left sided sta-mca bypass (performed by Dr.Steinberg). He is the greatest and I am so grateful for his expertise. He literally saved my life.  ;D

The gap between when i was diagnosed and time of the surgery was filled with numerous trips to Columbus, Oh to a Dr. Ronald Budzik, he performed numerous angioplasties, implanted a wingspan stent, and several more angioplasties before he was at a standstill and recommended a see a surgeon, he referred me to a local surgeon, who had no where near enough experience for me to allow him to do my surgery. So, i looked up surgeons, on the internet, that could perform the surgery. There is how i found Dr. Steinberg and sent him all my files and his staff  contacted me saying I was a definite candiate for the surgery.

Hello all My name is Antoinette im 31, I had a left side stroke last year in Nov. I got diagnosed with moyamoya this Thursday, it was really awful to think that I have this rare disease & will need to have brain surgery. I'm very blessed that this site is here bc this is so rare. I don't know where to go from here. Can you tell me will I have to shave my head?  :-/  :-[

Dr. Steinberg saved my life after the first surgeon in TN bought me sometime. My first surgery in Nashville TN on July 18,2005 did not take because my symptoms came back in November of 2005. So my mother researched this site and found the information about Dr. Steinberg and mailed him my test results. He called my parents to tell them we do not have much time you have to come down in three weeks this was the end of February 2006 she needs another surgery on her right side. My second surgery was a success on March 15, 2006!! I am symptom free!! Thanks to Dr. Steinberg and his team. Also because of my diet change and nutritional supplements I am not on any medications not even aspirin.

I was 39 years old and on the morning of May 10th I woke to a useless left leg and arm.  Up until this point I was quite healthy and had no health issues.  I went to my community hospital and called upon an old family doctor.  they found I suffered 3 strokes and I had a 7 to 8 millimeter aneurysm in the middle of my brain.  Ater a full week in the community hospital, none of the neurosurgeons could agree on a course of treatment.  that's when my miracle happened. Dr. Steinberg heard of my case from a colleague and offered to exam and treat me at Stanford.  I was extremely grateful and arrangements were made to transfer me to Stanford.   I was scared, but the night I got into Stanford a wonderful nurse told me I had the neurosurgeon I had was one of the world's best and I had little to fear.  Within hours of getting into Stanford, I finally had some relief in the left leg the feeling had begun to return and I was actually able to use it!! The next day Dr. Steinberg sent me home to recover from the strokes and get strong for the surgery.  Coiling the aneurysm wasn't an option, I would have to have brain surgery. I can't explain how nervous I was, but Dr. Steinberg was very confident and capable, I saw him twice before I agreed to this major surgery.  His team of Residents, Interns and nurses were amazing and just as competent as Dr. Steinberg.  Mid June I went into surgery and 7 hours later emerged.  Dr. Steinberg told me the anuresym was much  bigger then anyone expected and it was what caused the strokes.  He called it a giant aneurysm and that he had to use 2 titanium clips.  I was in the hospital for 4 nights, 5 days,  I was able to celebrate  my 40th birthday just a few weeks after surgery. It's been nearly 2 months since surgery and I am soooo thrilled to say that I have my life back!!! If you didn't know me before you would have no idea I went thru all of this.   How does one say thank you to an amazing surgery who saved your life???  saying thanks seems to pale in comparison.  Dr. Steinberg takes his work very seriously and I am beyond grateful for all he does.  I hope my story brings relief to some that are faced with a similar situation as I was. 

Right now, I'm seeing one of Dr. Steinberg's associates, Dr. Dodd. He has been very helpful throughout the process in determining what my diagnose is. I was diagnosed last year with Vasculitis but maybe Moya Moya. I've gone through series of tests, including brain biopsys last year and having 2nd opinions, it was Vasculitis. Earlier this year, my neurosurgeon was ready to put me on the Cancer meds for life. Having heard this, I was really nervous, so I decided to get another opinion, and she referred me to Stanford. I went to see, Dr. Dodd and he ordered tests so that he can compare the tests from the previous tests. His conclusions was, Moya Moya and NOT Vasculitis. He did mention, that even having a brain biopsys wouldn't show Moya Moya and that test shouldn't have been done. So, now in two weeks I will be having the zenon gas/diamox to determine if I can wait to have surgery, since I'm not ready to have it. Great doctors at Stanford! I keep hearing only the best!

My husband was told he had MoyaMoya father's day weekend of this year after two light strokes.....since that time we have contacted Stanford and all I can say is they are the BEST. Jason will have his first surgery July 19th and the second July 26th....we are flying out Sunday to start all of the preliminary testing. We are from Louisiana and we are looking forward to meeting BOB...he has been a angel from above coordinating this.  Keep us in your prayers along with our 4 year old son...he is so very young and he will be with family at home while we overcome this battle.  Prayers and well wishes to everyone.....Sissy Canton

please check "www.caringbridge.org/visit/megankloysuntia"

Dr. Gary is wonderful.
Bob is great.

Adisorn

I had surgery at Stanford on July 27, 2011. Every single person we met at Stanford was top notch.  They are kind and compassionate, helpful and understanding.  Teresa Bell-Stephens is an angel! Natalie from Social Services was excellent in getting us affordable housing (I am from Rhode Island), Bob coordinated all of my tests.  The nurses in ICU and on G1 are superb.  Dr. Steinberg is the BEST!!!! My surgery was on Weds. July 27, I was on the regular neuro floor by noon on Thursday and I was discharged on Saturday!  It was an incredible journey. If you need surgery for moyamoya and think you can't afford Stanford, call them, speak to Teresa, see what they can do to help.  It will be worth it. God Bless

Well, after hearing all of this great information in terms of how Steinberg and the staff treats you like family and is efficient and responsive, I have to say our experience has been the complete opposite.  Now, let me say that the most important thing is that the patient be treated and the doctor save his/her life.  That is my only real concern.  But, we really feel like we were just treated like a number or statistic, and never like family.  We met Steinberg for a total of 10 minutes, and he never seemed interested in any of our questions or anything like that.  After the surgery, he had about a minute for me to ask questions, then left looking perturbed.  Post-operatively, we saw him once.  And, since we left, his office has been nothing but a comedy of errors in getting our paperwork and required authorizations so that my spouse can get local care, if need be.  Believe me, it is most important that the doctor do the surgical part of the job.  I just thought that being a doctor also meant caring, literally, for the patient.

I was very surprised to read this last post by VW. While not for moya moya, I was operated on by Dr. Steinberg on Aug 3 and some people call me VW (my last name initials). Unlike the above VW, I have nothing but the highest praise for Dr. Steinberg and his staff. He is a very busy man and must delegate some follow up, but he does so with a VERY efficient and experienced team. Theresa and the rest of the staff I came in contact with were extremely conscientious and caring. Dr. Steinberg spent sufficient time with me before and after the surgery, but the most important time he spent with me was DURING the surgery. I will be forever grateful. He and the staff at Stanford literally saved my life.

Jason has had both of his operations and has really done well....it has been a process...he is also a Type 1 diabetic but he says he feels 100% better....he had negative blood flow on each side. Anyone out there who is scared and doesnt know which way to go please give Stanford a call. The aftercare he has received was by far the best we have ever witnessed.  The nurses were the best, everyone was so helpful. God bless each of you on your travels and please feel free to inbox us anytime!! ::)

My daughter, Rachel has been diagnosed with MM and we reached out to Stanford and once they read her scans, they contacted us within 24 hours and had advised surgery with Dr. Steinberg.  I was in shock, as the Dr. she is currently seeing in San Antonio had advised waiting until Sept and running another scan, and to basically wait and see.  He did admit that he did not know much about MM, but had to "google it".  I asked for a second opinion, and are still waiting to get in to see that Dr. at UT Health and Science here in SA, but in the meantime, we were fortunate enough to have a friend who helped us contact Stanford and now we are in talks with Bob and are in the process of getting my dauther registered "in the system".  This is all very frightening as we are facing all the expense of the traveling and temporary housing, and not sure if our insurance will pay for it (Tricare through Military).  Some family members have expressed why we can't find someone local to do the surgery.  Honestly, I can't find anyone local who even knows much about MM, so I sure don't feel comfortable with them operating on my daughter.  Reading all these posts about Dr. Steinberg and his staff does make me feel alot better.  Thank you all for sharing your experiences.

We are waiting on our authorization from Tricare so we can schedule surgery with Dr. Steinberg ASAP. Working with Bob and Teresa has been great.

My son age 3 suffered a stroke and was misdiagnosed with an AVM at LA Children's hospital.  We transferred our son to Standford.  Dr. Steinberg and his medical staff was far superior to LA.  I am grateful to have found his expertise.

All,
Just joined this site.  I would like to add my positive experience to recommend Dr. Steinberg.  My son's surgeries on 7/17 and 7/24 at LPCH and SUMC respectively.  Both were very successful...The first surgery increased blood flow volume for the right side by 10x (from 3ml pre to almost 30ml post).  The second surgery, the left side, was about 6-7x blood flow.  My son recovered fairly well, still has a some pain from the surgeries.  He has a slight speech issue that we are a little concerned about. 

His school is due to start on Aug. 13th, in which he believes he is ready to go.  I will have to closely monitor his progress during the first few months to make sure he can keep up with his classmates. 

Anyway, I am glad to have found this site.  Looking forward to all your MM comments and notes.

I'm scheduled for the two surgeries on Dec. 2nd and Dec. 9th at Stanford. I have no concern whatsoever with Dr. Steinberg. I've seen him twice and he is very cordial, and it's obvious that he's at the top of his league. I'm most impressed that such a talented, very busy doctor is willing to spend so much time with a patient. Dr. Steinberg has worked through my other medical issues with me during this time; I believe he has spent more time with me than my PCP.

I am, however, scared out of my ever-loving mind. The team at Stanford is incredible... Melissa, Bob, Dr. Steinberg...everybody I've met has been incredible and eager to help.

I'm hoping that I can speak to someone who has gone through the surgeries. I'm sure that HIPAA prevents them from giving out names of former patients. I'm not concerned about the staff. However, with no symptoms, I'm having trouble submitting to the surgeries.

Please, if you have had this surgery and are willing to share your experience with it, I would love to chat with you.

I'm seriously considering canceling and taking my chances with the possibility of future strokes.

I've spoken to a parent who had his child go through the process, but it would mean a lot to me to hear from an adult.

Oh yeah...how to contact me...remove the dashes and e-mail to...

driv------er--dude------at----y-a-h-o-o.-----dot-------com

Many thanks!

As I continued the sessions regularly and was very consistent which was the recommendation each week, I can truthfully state it was worth it. It was worth my time and own personal health. I have seen significant results. I am getting better each day and I finally feel whole. I am thankful for this given opportunity. My parents and I, are blessed through this journey.