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Dr. Gary K. Steinberg - Stanford, CA (Read 1302 times)
JayCanton
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Re: Dr. Gary K. Steinberg - Stanford, CA
Reply #25 - Jul 8th, 2011 at 2:54pm
 
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
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Adisorn Kloysuntia
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Re: Dr. Gary K. Steinberg - Stanford, CA
Reply #26 - Jul 12th, 2011 at 12:59pm
 
please check "www.caringbridge.org/visit/megankloysuntia"

Dr. Gary is wonderful.
Bob is great.

Adisorn
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janknit
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Re: Dr. Gary K. Steinberg - Stanford, CA
Reply #27 - Aug 9th, 2011 at 2:50pm
 
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
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VW
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Re: Dr. Gary K. Steinberg - Stanford, CA
Reply #28 - Aug 10th, 2011 at 11:28am
 
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.
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RNVW
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Re: Dr. Gary K. Steinberg - Stanford, CA
Reply #29 - Aug 22nd, 2011 at 4:47am
 
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.
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JayCanton
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Re: Dr. Gary K. Steinberg - Stanford, CA
Reply #30 - Aug 23rd, 2011 at 8:53pm
 
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!! Roll Eyes
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Stefanie
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Re: Dr. Gary K. Steinberg - Stanford, CA
Reply #31 - Apr 15th, 2012 at 11:22pm
 
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.
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Stefanie
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Re: Dr. Gary K. Steinberg - Stanford, CA
Reply #32 - Apr 26th, 2012 at 10:35pm
 
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.
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2x2709
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Re: Dr. Gary K. Steinberg - Stanford, CA
Reply #33 - Jul 4th, 2012 at 1:09pm
 
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.
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vnmonk
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Re: Dr. Gary K. Steinberg - Stanford, CA
Reply #34 - Aug 4th, 2012 at 2:23pm
 
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.
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Mr Fortunate
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Any Adults Willing To Discuss Experience
Reply #35 - Nov 28th, 2014 at 1:49am
 
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.
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Mr Fortunate
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Re: Dr. Gary K. Steinberg - Stanford, CA
Reply #36 - Nov 28th, 2014 at 1:52am
 
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!
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alexpik
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Re: Dr. Gary K. Steinberg - Stanford, CA
Reply #37 - Oct 24th, 2017 at 7:48am
 
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.
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