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-   Port Wine Stain Help and Resources (http://birthmark.org/board/forumdisplay.php?f=10)
-   -   Looking for some pws advice (http://birthmark.org/board/showthread.php?t=263)

anne 07-15-2003 11:06 PM

Looking for some pws advice
 
I am a proud mother of our 12 month old son who was born with a facial port wine stain. We have met with two doctors to get opinions on removing the pws. The doctor we are leaning towards is Dr. Susan Kilmer (Sacramento, CA). We have heard very good things about her. Does anyone know of Dr. Susan Kilmer and her work? We are eager to find out more info. on her work? :)

hankbartenbach 07-16-2003 02:13 AM

Re:Looking for some pws advice
 
Hi Anne, my name is Hank.

I have not heard about Dr. Susan, but I do know of a doctor is San Fransico. She is on this web page. If you want her info and other doctor's info look under the resourses and click on find a physician, then pick your state. It is located at the right side of this page.
Also, I was wondering do you live in CA, OR, or NV.
I live in Carson City NV and I do not talk to many people close to me.
Good luck with laser treatment. If you have any questions about it just ask I have been doing it for 14 years.

Talk to you soon.

Hank B

anne 07-16-2003 07:12 AM

Re:Looking for some pws advice
 
Hello Hank,

Thank you so very much for your kind reply! We live in California and I do not know any others dealing with a port wine stain as we are. Have you met with the doctor in San Francisco you mentioned? We have an appointment this Thursday to begin my son's pws removal and I am very nervous, scared, etc. for the first session. I think I am just scared of the unknown. Thank you so much for reaching out to me. If you have any advice, experiences you would like to share with me...I would really appreciate it. Thanks and have a good day!

hankbartenbach 07-17-2003 08:29 AM

Re:Looking for some pws advice
 
Hi anne,

Yes I have seen Dr. Frieden, she is a great doctor.
It is at the UNSF college. What they did was I made an appointment went in and several doctors from different fields look me over, also student doctors as well, they left the room then in a couple of hours brought me back my resaults. I think they handled it great. I ended up getting laser treatment on a new laser that they where still expermenting on. I voulentered for the treatment to see if it would work but know I had a very good chance of it scaring, and it did. The real reason I went there was to see if I could get my H's removed but with my artery it was to risky and I could not get treated. They are still looking over my MRI's incase it is possable for other treatment. I still need to go back for a follow up on my laser treatment. I have heard very good resaults from this website from this doctor. Your child still has a chance and this office is full of Vascular doctors and if your son has a chance for his marks to be removed they will do it. They have 14 different lasers there. Dr. Zachary was the doctor that gave me the treatments. Also, depending on your insurance they will pay most of the bill. My bill was nine hundred dollars and all I have to pay is one hundred. when you go to the doctors office ask what machine they will be using on your son. Also, tell me what the doctor says.

I have used four different kinds of laser machines, I have been awake, and put under for treatments, and I have been thru it all name calling, made fun of, laughed at, and etc etc.
If you can get your sons mark removed before he starts school he will get thru school alot easier then with his mark.
I hope the oppointment goes well and let me know what happens.

Hank B


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