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.

;;D

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]pednsurg@msmail.his.tch.tmc.edu
Sincerely, Michelle Fredieu

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

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

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.  

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

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

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

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 :-/

My prayers are with mm sufferers and survivors!  

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?

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!

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.

 :)

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=huh.gif]

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.

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 :)

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

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

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

;;D

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

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.

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

My surgeon was Dr. Michael Pritz from, Indiana University Med Center in Indianapolis, IN.

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.

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  :) ), 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!

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

My daughter PJ just had surgery on Oct. 26, 2007 she is 5 yrs old now her surgeion was Dr. Mark Lucanio at the Cleveland Clinic in Cleveland OH.  If anyone needs some information on him please let me know through an e-mail at ChristaBrosius_71@yahoo.com [smiley=laugh.gif]

I've never posted who done my surgries  :) My 1st surgery was done @ the Mayo Clinic in Jacksonville by Dr. Michael Link (he is at the Mayo in Rochester now) My 2nd surgery was in Orlando Florida by Dr. Christopher Baker,    Both were Very Good......I Believe Dr. Link really saved my life since I had 2 Strokes a couple days before my 1st surgery.....I am a diabetic with high blood pressure and high cholestrol (all 3 of these things put me @ high risk)  It will be 10 years on New Years Eve. since my 1st surgery..... :D

Dr. Muhonen at Childrens Hospital of Orange County did my daughter's EDAS procedure in August 2005.  I considered Dr. Steinberg at Stanford, and also a doctor at UCLA doctors, but ended up staying local (we live in Orange county) to be close to home and have the support of family and friends. I didn't want the surgery to be performed by medical students at UCLA, and I knew that an experienced surgeon (Dr. Muhonen) would do it at CHOC.The procedure was successful, but the area has not revascularized to the point the doctor would like to see...likely because Amanda is in a wheelchair due to Muscular Dystrophy.  However, the improved blood flow seems adequate for her needs,and she has not had further strokes.

My wife was just diagnosed July 10, 2008.  Her neurologist has recommended a Dr. Paul Camarata in Kansas City, Missouri, we live in St Joseph, MO.  We are kind of new to the area and know nothing about this doctor.  Has anyone heard of him and can tell me something about him.  thanks.

I'm sorry to hear your wife has been recently diagnosed, but I'm so glad you found us!  I know that this is a very overwhelming and confusing time, but this site and the people here are here to HELP YOU THROUGH THIS!!!!  You're not alone!!

Read up on much as you can and ask questions if you need to.  I would do some extensive homework on this Dr. that has been recommended to you, EXPERIENCE DOES MATTER!!  My husband had both his surgeries at Stanford in California with Dr. Steinberg, a leading moyamoya expert.  He will review films and Xrays for free and will give you his expert opinion regarding the surgical options for your wife.  Just because a doctor says they can perform the surgery, doesn't necessarily mean they are experienced at treating the disease.

We are here for you and your family, I look forward to hearing from you!!

Very best,
Stephanie

 

My son (who is 2 years old now) had his surgery when he was 8 months old by Dr. David Frim, Cheif of pediatric neurosurgery. from the University of Chicago[/color].  If this is for and adult in the Chicago area, he may be able to point you to who he believes you should go through.  Dr. Curry also participated in my sons surgery, but I am not sure if he too is strictly pediatric.

e-mail: dfrim@peds.bsd.uchicago.edu
phone: (773)702-2475

I hope this will be of some help at least to one person.
Abbe Harpp
Merrillville, IN

We have a 14 yr old daughter adopted from Bangladesh who just had surgeries by Dr. Jodi Smith at Riley Children's Hospital in Indianapolis.  She trained in Boston with Dr. Scott, and was excellent.  She has a very special interest and dedication to her moyamoya patients, and we highly recommend her.  

Hi my daughter has had bypass surgery in New Zealand with Mr Andrew Law. He is our expert here and has performed all of the moyamoya patients here to my knowledge. Liz

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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I would like to recommend Dr. Robert A. Mericle, in Nashville at the HW Neurological Institute (615-320-0007), who did two surgeries this past year (2013) on my son, 40 years old, who is recovering well, and back to work now.

charles coryn