edslisa
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Registered: 04-2008
Posts: 19
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Just my opinion...
Hi,
I and all 8 of our children have ACM/EDS/TCS so we are frequent flyers with doctors. I am also a moderator on a couple of boards so I know of a couple of good doctors.
These are doctors we use or close friends have used.
Dr. Thomas Milhorat
The Chiari Institute
Dr. Paolo Bolognese
The Chiari Institute
Dr. Chan Ranpraprunt
The Chiari Institute
Dr. Richard Ellenbogen
Children's Hospital Seattle
Harborview Hospital
Dr. John Oro
Denver, CO
Blessings,
Lisa
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4/2/2008, 2:21 am
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Keggler
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Re: Just my opinion...
Hello everyone---I wanted to post my Dr. He is very caring and
knowledgeable in ACM S/M.
If anyone wants to E-mail me, please fell free to.
DR Michael Rosner
Fletcher,NC (near Hendersonville)
828-684-1972
Later---...Jerry in Carolina...
ACM1,S/M,BI,Kinked brain stem
Decompressed 12/07
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5/16/2008, 10:43 am
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GaleB
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Location: South Carolina
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Re: Just my opinion...
Thanks for sharing this Jerry.
Welcome to the board from Carolina! I have heard of your Doctor. I am so glad you like him and he is close for you.
Hendersonville is a beautiful mountain place. Lovely!
Gale
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5/16/2008, 12:22 pm
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horseshadowrider
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Location: Washington state
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Re: Just my opinion...
I have heard a lot of great things about Dr. Rosner, as well. It's really good to have a tried and true list here that might help lead others to experienced doctors. Wish we could clone some of them and spread them around the world a bit more, don't you?
---
Virginia
4 plc fracture of the C1, Tethered Cord, (acquired chiari and elongated brainstem resolved by Tethered Cord surgery); atlanto occipital dislocation and cranial settling all due to equestrian accident,
2004. CC Fusion upcoming.
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5/16/2008, 11:44 pm
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Joleen711
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Re: Just my opinion...
Dr. Oro is my NS and is the most caring, compassionate, thourough doctor I have ever met.He is my angel and such a blessing to me. He is in Aurora, Colorado. If anyone needs additional information please feel free to email me.
Thank you, gentle hugs, Joleen
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5/17/2008, 11:51 am
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horseshadowrider
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Location: Washington state
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Re: Just my opinion...
Joleen, I'm so glad you dont' have to travel "TOO" far from NM to Denver area!! I'd go to him, too, as he's closer than NY by far (I live in WA) but with my complex stuff which really doesn't include CM, NY was the place I had to go.
thanks JOleen! Also great to state that you are willing to help anyone know more about Dr. Oro, too!
---
Virginia
4 plc fracture of the C1, Tethered Cord, (acquired chiari and elongated brainstem resolved by Tethered Cord surgery); atlanto occipital dislocation and cranial settling all due to equestrian accident,
2004. CC Fusion upcoming.
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5/17/2008, 12:01 pm
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zoe ashcraft
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Re: Just my opinion...
Hi all,
Even though no doc is perfect, I have to say that Dr. Francomano in Maryland (geneticist) is an excellent doctor for EDSer's~ she's also experienced enough to have a clue dxing tethered cord and CCI, Chiari.
In addition to that, I was surprised that Dr. Moghadam is also an excellent geneticist available for MediCal patients- in Sacramento area, UCDMC. Experience with the above mentioned conditions too.
Rainbows*
zoe 
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5/30/2008, 11:15 pm
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