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Dr. Gary K. Steinberg - Stanford, CA (Read 35737 times)
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Dr. Gary K. Steinberg - Stanford, CA
Dec 14th, 2003 at 3:19pm
 
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/
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« Last Edit: Jul 20th, 2008 at 9:59am by MrsDeej »  

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Re: Dr. Gary K. Steinberg - Stanford, CA
Reply #1 - Jun 2nd, 2004 at 2:19pm
 
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  Smiley
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Re: Dr. Gary K. Steinberg - Stanford, CA
Reply #2 - Jul 22nd, 2004 at 6:25pm
 
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
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Re: Dr. Gary K. Steinberg - Stanford, CA
Reply #3 - Sep 21st, 2004 at 7:37pm
 
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.
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Re: Dr. Gary K. Steinberg - Stanford, CA
Reply #4 - Sep 27th, 2004 at 6:29am
 
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  Smiley.  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
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Aloha,&&Melly Smiley
 
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Re: Dr. Gary K. Steinberg - Stanford, CA
Reply #5 - Nov 1st, 2004 at 8:17pm
 
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?
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Re: Dr. Gary K. Steinberg - Stanford, CA
Reply #6 - Apr 16th, 2005 at 8:50pm
 
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 Smiley

Jenny
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Re: Dr. Gary K. Steinberg - Stanford, CA
Reply #7 - Dec 14th, 2005 at 11:01pm
 
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.
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Re: Dr. Gary K. Steinberg - Stanford, CA
Reply #8 - Jul 29th, 2006 at 3:32am
 
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 !
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Re: Dr. Gary K. Steinberg - Stanford, CA
Reply #9 - Jul 31st, 2006 at 1:43am
 
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 : )
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« Last Edit: Jul 31st, 2006 at 1:44am by lotsofkids »  

Hmmm....seems I'm kinda "special" LOL
 
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Re: Dr. Gary K. Steinberg - Stanford, CA
Reply #10 - Sep 20th, 2006 at 4:04pm
 
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
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Hmmm....seems I'm kinda "special" LOL
 
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Re: Dr. Gary K. Steinberg - Stanford, CA
Reply #11 - Sep 23rd, 2008 at 7:05pm
 
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
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Re: Dr. Gary K. Steinberg - Stanford, CA
Reply #12 - May 12th, 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
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Re: Dr. Gary K. Steinberg - Stanford, CA
Reply #13 - May 12th, 2009 at 5:55am
 
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 …
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Re: Dr. Gary K. Steinberg - Stanford, CA
Reply #14 - May 12th, 2009 at 8:51am
 
giznot wrote on May 12th, 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)
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1st stroke in September 2008, age 10 months
Bi-lateral mm diagnosis
2nd stroke in November 2008, age 1 year old
Left side surgery in December 2008
13 years on now
Doing just great!
 
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Re: Dr. Gary K. Steinberg - Stanford, CA
Reply #15 - May 12th, 2009 at 10:04pm
 
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
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Re: Dr. Gary K. Steinberg - Stanford, CA
Reply #16 - May 13th, 2009 at 1:53am
 
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.
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Re: Dr. Gary K. Steinberg - Stanford, CA
Reply #17 - Nov 20th, 2009 at 2:27pm
 
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)
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Re: Dr. Gary K. Steinberg - Stanford, CA
Reply #18 - Nov 20th, 2009 at 9:17pm
 
Hi Rachel, Smiley 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

Mar
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Re: Dr. Gary K. Steinberg - Stanford, CA
Reply #19 - Nov 25th, 2009 at 10:16am
 
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
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« Last Edit: Nov 25th, 2009 at 10:29am by JLew »  
 
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Re: Dr. Gary K. Steinberg - Stanford, CA
Reply #20 - Apr 14th, 2010 at 2:47pm
 
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.  Grin

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.
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Re: Dr. Gary K. Steinberg - Stanford, CA
Reply #21 - Jun 26th, 2010 at 9:56pm
 
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?  Undecided  Embarrassed
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« Last Edit: Jun 26th, 2010 at 9:59pm by BABYNETTE31 »  
 
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Re: Dr. Gary K. Steinberg - Stanford, CA
Reply #22 - Aug 8th, 2010 at 11:47am
 
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.
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I am grateful to God for my life!
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Re: Dr. Gary K. Steinberg - Stanford, CA
Reply #23 - Aug 9th, 2010 at 3:23am
 
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.
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Re: Dr. Gary K. Steinberg - Stanford, CA
Reply #24 - Apr 30th, 2011 at 7:31pm
 
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!
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