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Barbara,

All of my childhood doctor visits concerning CMT were through the A.I.

DuPont Institute in Wilmington. Unfortunately, I don't have any experience

with the doctors practicing there today because I was treated in the late

1960's and early 70's.

I do know it is a hospital with a VERY long history of recognizing and

treating CMT. My oldest sister had her CMT surgery there, and that had to

be back in the 50's or even earlier. The expertise there should be top-rate

based on their long history, but like I said I have no experience with

specific doctors there in the last 25 years.

Good luck in your decision!

Ruth

>From: ranagan@...

>Reply-onelist

>onelist

>Subject: [] Doctors

>Date: 9 Feb 2000 15:13:43 -0000

>

>From: ranagan@...

>

>Hi, Barbara here.

>

>My apologies to nne for not sending the promised articles. I have

>been running around and I simply dropped the ball. I will try to send them

>soon.

>

>I want to ask the group if any of you have had specific experience with

>Doctors at s Hopkins University( " JHU " ) or at the Alfred I. duPont

>Hospital for Children ( " duPont " ) in Wilmington, Delaware. Slowly but

>surely, I am moving toward surgery for Alice (age 8).

>

>We have seen Dr. Jayakumar ( " Dr. Jay " - an orthopedist), Dr. Scavina

>(neurologist),

>and Dr. McKensie (orthopedist) -- all of whom are at duPont. We have also

>seen Dr. Crawford (neurologist), Dr. (orthopedist) and Dr.

>Sponseller

>(orthopedist) at JHU.

>

>If you do not feel comfortable commenting in this forum, please feel free

>to contact

>me directly at ranagan@... or at my home phone 301-320-3818. Thanks

>

>Barbara

>

>---------------------------

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  • 1 year later...

Yes, Dr. Terry Pfau.

He is a naturopathic or holistic doctor, but I have not seen him. I have only talked with the receptionist.

Patty

----- Original Message -----

From: jay igert

Sent: Monday, September 10, 2001 2:24 PM

Subject: doctors

Has anyone heard of Dr Terry Pfau in Las Vegas or Dr. Whitaker in Newport Beach CA?

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  • 4 months later...

With all due respect to everyone here, I think the truth (both good and bad experiences) should come out on this site, regardless of who it offends. My only objection is to dangle the carrot and leave Angelika to wonder "what" this issue about Gordon is about. That seems like game playing to me. If something needs to be said, say it. Like Patty says, information is better told than withheld. Truth is better than lies.

Pearl

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I understand that (it appears) something is up with Dr. Gordon's past record. The website says there is more detailed information. To me, that implies a possible problem. It would help if Dr. Kolb would explain. If he has made errors, we should know about this if this is in fact the case. I was thinking about flying from Chicago to see him. Information is power. I thank anyone for accurate information.

Pearl

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Hi Patty,

No, that's not really 'all that matters' --- I know, because I've been there, with my explantation. I went to one of the most highly acclaimed PS's in the Dallas Metroplex, based on my daughter's medical professional recommendation --- after she sat through a 3-hour lecture of his to over 500 medical professionals regarding breast implant problems, and the reasons for -- and methods of explantation. About 6-months later, and 2-months post my explantation, I found out he was on retainer with DOW. His Curiculum Vitae is more than impressive, and I knew he was in the process of trying to develop an implant that was safe, etc. --- it was the "soy-filled" implant. He even told me it would prove to be sooo safe you could drink the contents 20-years later! Ha!

How do you think I felt afterwards, although I was very pleased with my outcome, and his follow-up care? How do you think I felt when I referred others to him who questioned me about his affiliation with Dow?

MM

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I am with you girl I just feel that it needs to be done in a way that will not upset people who are in very sensitive positions right now.

I think for now we need to move on because this is really not productive for the group at this time.

I am so upset I cannot express myself well right now so I will not even try.

I am saddened that we are once again arguing when we need to support eachother.

Love,

----- Original Message -----

From: perlesetlacet@...

Sent: Friday, February 01, 2002 10:01 PM

Subject: Re: Doctors

With all due respect to everyone here, I think the truth (both good and bad experiences) should come out on this site, regardless of who it offends. My only objection is to dangle the carrot and leave Angelika to wonder "what" this issue about Gordon is about. That seems like game playing to me. If something needs to be said, say it. Like Patty says, information is better told than withheld. Truth is better than lies.Pearl

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