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Ok, here is how I envision this board working... (Read 37265 times)
DJ
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Ok, here is how I envision this board working...
Dec 14th, 2003 at 3:30pm
 
We've had several questions lately about doctors from around the world who have experience treating Moyamoya. I've put this board up hoping to be able to help out other's find a doctor in their "local area" with Moyamoya experience who other's have had experience with.

If you, or someone in your family has had an experience with a doctor/surgeon who knows about Moyamoya, please post their name/location in a new post on this board.

A "thumbs up" or "thumbs down" for your "Message icon"... your experience with the doctor, and a link to the doctor's information page on the web would be helpful.

I know there are some Dr's in the Houston, Chicago, Dallas, Wisconsin, UK, Sweden, and Australia areas that some of you could add?

I've added both Dr. Scott and Dr. Steinberg's info so you can see the format I'm looking for...

If you have any questions about what format I'm looking for, please let me know via PM or email.

;Grin
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« Last Edit: Dec 14th, 2003 at 3:38pm by DJ »  

Adversity does not build character... it reveals it... I help my neighbor and my neighbor helps someone else. Life is a wonderful circle!
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Michelle
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My daughter Cally has
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Campti, USA, usa, 328, 259, LA, Louisiana
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Re: Ok, here is how I envision this board working.
Reply #1 - Dec 15th, 2003 at 8:22pm
 
My daughter Cally had surgery at Texas Children's Hospital in Houston. Dr. Robert Dauser performed her surgery. He is a pediatric Neurosurgeon. He has performed several of these surgeries and also developed a procedure by cutting a square piece of the brain dura and laying it directly on the brain. This some how makes the blood vessels multiply tremendously. Cally is doing great and has not had any further problems. You can contact Dr. Dauser at:
[email][/email]
[/color]pednsurg@msmail.his.tch.tmc.edu
[color=Black]
Sincerely, Michelle Fredieu
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Michelle Fredieu
 
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gilberttl
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Re: Ok, here is how I envision this board working.
Reply #2 - Jan 1st, 2004 at 12:41pm
 
I had bypass surgery performed by Dr. Sam Finn in August,2003 at Baylor UMC, Dallas,TX.  He had past experience with MM in children.  His bedside manner could be better, but he is anexcellent surgeon, if anyone in the Dallas area needs one.  Tricia Gilbert
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siri
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Re: Ok, here is how I envision this board working.
Reply #3 - Feb 18th, 2004 at 4:45pm
 
Hi DJ--I can tell you I saw Dr. Robert Spetzler at the Barrow Neurological Institute at St. Joseph's Hospital in Phoenix, AZ.  He did my STA bypass in 1999, and last month did a revascularization procedure for me.  The Barrow Neurological Institute is located at

      2910 North Third Ave
      Phoenix, AZ  85013

Their phone number is:    (602)406-3489

I think he is a very competent surgeon, but I had a pretty negative experience this time as far as follow up instruction, what to expect for my recovery, what to do or not do, etc.  If anyone has had a revscularization procedure and received helpful instructions from their surgeon as far as what to expect in recovery, I would love to hear about it!

Thank you for all your hard work on this site.
Siri

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jane
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Re: Ok, here is how I envision this board working.
Reply #4 - Feb 19th, 2004 at 12:33pm
 
For those of you in Southern California, I would strongly recommend neurologist and stroke specialist, Dr. Jeffrey Saver at UCLA and neurosurgeon, Dr. Neil Martin, also at UCLA.  My husband was also originally treated by Dr. Chelsea Kidwell, stroke specialist at UCLA.  Unfortunately, she's gone on sabbatical, however, Dr. Saver is equally as good.  Dr. Martin at UCLA was the neurosurgeon who performed my husband's surgery and we can't say enough good things about him.  All have experience with this disease and, in this area, I don't think you'd get more qualified and caring doctors.
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rickswife
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Re: Ok, here is how I envision this board working.
Reply #5 - Mar 10th, 2004 at 12:58am
 
Rick had a bypass and a muscle flap (layman terms) on the brain July 30, 2003 at University of Iowa Hospital in Iowa City, Iowa.  His neuro was Dr. Patricia Davis and neurosurgeon was Dr. P. Hitchon.  Rick is doing well  and they are experienced but I do think information as to expectations is sorely lacking.  I wish I knew what the future holds.   p.s. Rick was 59 at time of surgery.  Sandy
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pepsi
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Re: Ok, here is how I envision this board working.
Reply #6 - Apr 11th, 2004 at 2:53pm
 
i was just recently told i have moya moya and will be facing surgery with dr maurer in rocherster ny. does anyone have any information about him? I am real worried about the surgery and what too expect. My email is pepsidriver24@hotmail.com  thank you
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Ronda_Whitsitt
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Re: Ok, here is how I envision this board working.
Reply #7 - Apr 11th, 2004 at 8:38pm
 
Pepsi,
My husband has mm and hasn't had any surgeries yet, so I can't give you any advice in that department.  I hope and pray everything goes well and I'm sure it will.  Wishing you all the best! Texrw
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Kristina
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San Antonio, USA, usa, 258, 275, TX, Texas
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Re: Ok, here is how I envision this board working.
Reply #8 - Jun 21st, 2004 at 8:43am
 
Hi, my name is Kristina and I was diagnosed in Nov 2001 asn was 29 at the time.  recently, I have been experiencing TIa's so I have chosen to have the surgeries and get cured!  I will be having the first on 6/30 and 2nd on 7/7 at Stanford with Dr. Steinberg.  Why did you opt to use another Dr for your second surgery.  Just curious,  Thanks Undecided

My prayers are with mm sufferers and survivors!
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CarasMOM
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My 11 year old Cara has
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Sedalia, Missouri
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Re: Ok, here is how I envision this board working.
Reply #9 - Jun 23rd, 2004 at 12:42am
 
Dear Pepsi,

The name Dr. Mauer doesn't sound familiar to me..is he at the Mayo???  My daughter is going to have Dr. Fredric Meyer do the surgery on July 14th..I will keep you posted on him...but he has a wonderful "email" manner and know he'll have a wonderful bedside manner, too.  Took his time to answer any questions I had regarding Cara's upcoming STA-MCA bypass surgery and encephalomysosynagiosis, too.  I was in Rochester last week (June 12 through 19) wonderful town...the Mayo is HUGE there having ST. Mary's and Rochester Hosptial part of their clinic.  I see your post was in April so am wondering if you already had your surgery and how did it go?
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Warm Hugs and Prayers, CarasMOM (Carol)
 
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coy4u2
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Pacific Northwest Surgeon
Reply #10 - Jul 10th, 2004 at 11:27pm
 
Hi,

My Grandson, age 4, just had surgery done by Dr. Richard Ellenbogen, Children's Hospital, in Seattle.  He specializes in pediatric surgery and has done several surgerys for Moyamoya patients.

Dr. Ellenbogen has been great!

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Re: Ok, here is how I envision this board working.
Reply #11 - Sep 3rd, 2004 at 4:38am
 
Hi, when my son was diagnosed with moya moya 5 years ago i had problems finding a surgeon in england who even knew what the disease was.  Eventually I discovered Paul May originally from Walton Hospital in Liverpool who has since moved to Alder Hey Childrens Hospital in Liverpool.  Ben was the fourth child he had done this procedure on (Ben has now had both sides done) but since ben I believe he has operated on many more.  He is a very approachable doctor and I have much confidence in him.  Telephone for Alder Hey is 0151 - 228 - 4811.

  Smiley
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Re: Ok, here is how I envision this board working.
Reply #12 - Sep 26th, 2004 at 5:06pm
 
Hi, DJ & evryone!  I'm glad to find this site and also surprised that there are many MM patients outside of East Asia.

I was born in Japan, has been living in Toronto for the past 10 years.   I was diagnosed as MM last October (when I was 27) in Japan, haven't had a surgery, but has been on several medications since then, still considering about the surgery. 

I'll be so glad if anyone has knowledge of the neurologist or neurosurgeon who has experience with MM in Canada (Ontario), will you please post the doctor's contact?

Thanks,

EK     Smiley
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lisa twin b
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Re: Ok, here is how I envision this board working.
Reply #13 - Oct 7th, 2004 at 8:11pm
 
Hey DJ ,  Since i was diagnosed with mm, i have met three other women here in Houston texas that have had wonderful results with Dr. James Rose at The Methodist Hospital. He is has a lot of experience and a wonderful bedside manner. We all highly recommend him.
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Re: Ok, here is how I envision this board working.
Reply #14 - Nov 13th, 2004 at 11:27pm
 
Hi I am Debby my daughter had surgeries back in the mid 80's We had Dr. Leslie Cahan The surgery was done at univ of Ervine medical center just 1 exit past Disneyland. He was sooooooo good very understanding just a wonderful man I thank God every night for how he saved my littlr girl. Last I spoke with him he was at Kaiser Sunset Hollywood Calif. Back when he did the surgery it wasn't done much and she only had a 40% chance to survive. But he pulled her through not only 1 time but 2 times.  Shannon will be 29 in January and has been stroke free ever since he did her surgery . Just a name I will never forget. I hope this helps some one out there.....
Debby Smiley
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xxxxxoooooooooo

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Re: Ok, here is how I envision this board working.
Reply #15 - Apr 30th, 2005 at 3:36pm
 
MY DR IS AT UCSF MY SURGERY IS SCHEDLUED FOR MAY 2ND 2005 HE IS VERY INFORMED ON THE SURGERY AND THE DIEASE ILL KEEP YOU INFORMED HIS NAME IS DR LAWTON THANKS DEBBIE
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moyamoi
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Re: Ok, here is how I envision this board working.
Reply #16 - Jun 1st, 2005 at 5:53am
 
Hi DJ and everyone,
My surgeon's name is Dr. Emil Popovic and I cannot speak highly enough of him - he is a brilliant man and brought me through 2 STA-MCA's with no problems. He is in Perth Western Australia. He is caring and meticulous in his job and  and I highly recommend him for what it's worth
moyamoi
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Re: Ok, here is how I envision this board working.
Reply #17 - Sep 19th, 2005 at 10:00am
 
My neurosurgon was Dr. Michael Pritz at Indiana University in Indianapolis, Indiana.  He has had experience and as far as I know (my 2 surgeries were in Mar & May 05) he is very competent.

Linda
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Re: Ok, here is how I envision this board working.
Reply #18 - Apr 27th, 2006 at 10:06am
 
;Grin

Hi, DJ.  My son had the EDAS procedure performed on 3/24/06 by Dr. Stephanie Einhaus, and Dr. Clarence Watridge is performing an EC/IC Bypass today.  I love both of these doctors and would recommend them thoroughly.

Semmes-Murphey Clinic
Humphreys Blvd.
Memphis, TN

(901) 522-7700
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Di Di Ross,&&Mom to Zach (age 10), dx with chiasmatic/hypothalamic glioma in 7/03 and Moya Moya in 3/05
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Re: Ok, here is how I envision this board working.
Reply #19 - Jan 23rd, 2007 at 9:48pm
 
I had by-pass surgery at the University of Iowa Hospital in 2003. Dr. Patrick Hitchon did the surgery. I was very pleased with him. I seen a post by rickswife that they also seen him. Would like to know how they are doing.
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Re: Ok, here is how I envision this board working.
Reply #20 - Feb 22nd, 2007 at 9:08pm
 
i would like to add the surgeon who did my surgeries. i had my first surgery in december 1999 and the second one was march 2000. his name is Marc. Vanefsky, kaiser permenente hospital in anaheim calif. he specializes in this procedure. he diagnosed my problem and  he had me in surgery within a week of my diagnosis. i was 35 years old. i am fine now and i truly believe it was Dr. Vanefsky who saved my life.


jeff williams
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Linda
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Re: Ok, here is how I envision this board working.
Reply #21 - Feb 24th, 2007 at 11:33am
 
My surgeon was Dr. Michael Pritz from, Indiana University Med Center in Indianapolis, IN.
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Re: Ok, here is how I envision this board working.
Reply #22 - Apr 19th, 2007 at 7:47am
 
I had surgery in Houston, Texas at UT Physicians and my doctor is Dr. Dennis Vollmer. He is located at 6410 Fannin Street, Houston, Texas 77030. He was wonderful. He explained to me and my family the procedures and he works with Dr. James Grotta who is my stroke specialist. They are both really good doctors.
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Re: Ok, here is how I envision this board working.
Reply #23 - May 29th, 2007 at 11:32pm
 
I cannot say enough good things about Dr. Howard Yonas at the University of New Mexico Health Sciences Center in Albuquerque, New Mexico.  He's the most fantastic surgeon and has the best bedside manner!  Just to give an example of how much he puts people at ease (me in particular, of course  Smiley ), a few weeks ago when I got out of surgery (STA-MCA bypass) and was in ICU, the nurses were really concerned because my blood pressure was too high and they could not get it to come down.  Alarms were ringing everywhere, which didn't exactly help the situation!  They called Dr. Yonas and he walked into my room and my blood pressure immediately dropped 30 points!  My nurse couldn't believe it.  You just know you are safe and everything will be OK when he's around.  He is the most amazing man I've ever encountered and if you are anywhere near New Mexico (or even if you're not) and need surgery, I highly recommend him!
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Andreana
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Re: Ok, here is how I envision this board working.
Reply #24 - Jul 31st, 2007 at 11:28pm
 
Hi DJ,

Please add to the list:

Dr. Robert Rosenwasser, Professor and Chairman
Thomas Jefferson University Hospital
Department of Neurosurgery
909 Walnut Street, 3rd Floor
Philadelphia, PA 19107
Office: 215-955-7000

He perform my surgery along with his fellow at that time, Dr. Roc Chen. Dr. Chen has since moved to:

Dr. Peng "Roc" Chen
Baylor College of Medicine
Department of Neurosurgery
1709 Dryden Road, #750
BMC 650
Houston, Texas 77030-3411

Dr. Chen also trained under Dr. Michael Scott from  Boston.

Thanks a lot for posting these two doctors.

Best regards,

Andreana
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