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Old 10-12-2004, 12:53 AM
juliemn juliemn is offline
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Join Date: Sep 2004
Posts: 95
Default Minnesota Moms

I read a post here recently about Dr. Wood at Gillette Childrens, and Dr. Lee and the U of M.

I was curious to know if you have any more to say about either of these doctors.

We have been seeing Dr. Wood for 2 years, but are considering a second opinion and have made an appointment with Dr. Lee. Our son has an extensive facial PWS. We are concerned that it is more involved...i.e. gums, inner ear, etc. He also already has hypertrophy. He has never had an MRI, and we want one. However Dr. Wood dismisses all of our questions continuously. It's very frustrating.

I agree that Gillette is wonderful to go to. I also agree that Dr. Wood is a very good Plastic Surgeon. He just doesn't seem to want to address any of the medical issues that may occur with a PWS.

I also have an appointment at the Mayo Clinic...however they are out of network for my insurance provider. It would be a costly decision.

Feel free to email me, I welcome anyones ideas at this point. I seem to have hit a brick wall.

Julie
boges1@sherbtel.net
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Julie H
Mom to Ben (multiple AVM's, PWS, SWS)
www.MeetBen.com
jshiggie@gmail.com
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Old 10-14-2004, 12:56 AM
hankbartenbach hankbartenbach is offline
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Join Date: Oct 2002
Location: Nebraska
Posts: 533
Default Re:Minnesota Moms

Hi Julie,

I am curious, how extensive the facial PWS is.
Because I have PWS on my top gum, palets, and trout, and in my right inner ear. I have it on my face, nose, and crown.
I have Sturge Weber syndrome, which means my marks are very deep and are also on the brain.
I am wondering if your son might have a chance of having alittle bit of SWS.
An MRI would tell for sure exactly where he has his PWS.
I strongly suggest getting a doctor that knows what they are doing and will tackle the problem instead of avoiding it. Have you looked to the right of this web page under resources click on Find a physician and then your state or one close to it, then find a doctor that will help you.

My PWS has given me hearing loss, and has grown over the years. The sooner you get it treated the less it will effect your sons life physically and emosionally. I am 22 years old and have been doing laser treatment for 14 years off and on. Now I am going to see Dr. Waner in Jan for surgery.

I hope this has helped and please if you have any other questions please ask we are here to help.

Hank
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