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View Poll Results: Has anyone one had laser teatment
Yes 19 50.00%
no 3 7.89%
would never have because it is apart of me 0 0%
am thinking about it 4 10.53%
I have and it did work and it is all gone 0 0%
I am and it is working 9 23.68%
would like to but can not find a machen 2 5.26%
other 1 2.63%
Voters: 38. You may not vote on this poll

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  #41  
Old 05-19-2005, 04:53 AM
hankbartenbach hankbartenbach is offline
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Join Date: Oct 2002
Location: Nebraska
Posts: 533
Default Re: Laser treatment

Hi bwalk,

My name is Hank and I am 22 years old (until Sat) with PWS on the right side of my face.

I know exactly how you feel. I am proud of you for not trying to hide your PWS. It takes a strong will to do that. People tell me that all the time.

Talk to you soon.

Hank
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  #42  
Old 11-09-2005, 04:14 PM
hankbartenbach hankbartenbach is offline
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Default Re: Laser treatment

Hi everyone,

Just wanted to bring this poll back to the front to see if any new people are on the group that might be interested in voting on this subject.

Thank you all that have voted.

Hank
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  #43  
Old 11-17-2005, 02:06 AM
meganm
 
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Default Re: Laser treatment

My daughter Kate is almost 3 months old, she was born with an extensive PWS across her face (chin, jaw, cheek, temple, half her scalp), down her neck, on her back and chest, left arm and left hand. Today we went to Seattle Childrens Hospital for the first test of the pulse dye laser, it was pretty intense for us, having to hold her down while she screamed with her eyes covered with pads, but she seemed to forget about it quickly after. we used no numbing cream for the test, which was 3 spots on her face and 3 spots on her arm. Right now she just has 6 dark bruises, we'll wait and see which spots do the best so we can begin treatment in january and know what level laser to use. She'll be put under for the one in January. It's so big the doc doesn't think he'll do it all in one day, but he wants to begin with the facial PWS as soon as possible. After January he said come back every other month, about 6-8 times, for best results.

Hank, I'm glad you say it doesn't hurt much. with an infant who can't speak it's hard for us to know. We meet with an opthamologist in january too to see about glaucoma. She may also have KTW (Klippel-Trenay- Weber, can't remember the spelling) b/c her left arm is 1 cm wider than her right and if it is KTW it will continue to grow as she gets older. We need an MRI to diagnose this, but she needs to go under for that so we'll wait until one of her laser treatments when she's already going under anyway.

It's great to read everyone's posting s and know we're not alone. we worry about the social impact on kate as she gets older but will let her decide if she wants to use makeup. we'll have to figure out how to make her confident about it yet also explain that we were zapping it with lasers since she was a baby - that is sending mixed messages an i don't know how we'll cover it, i guess i have a few years before i need to worry about that though...

-Megan
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  #44  
Old 11-17-2005, 03:53 AM
nickbar nickbar is offline
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Default Re: Laser treatment

Hi, my son has been treated by Dr. Perkins in Seattle also (with laser). They put my son under g.a. because his h. is/was extensive and near his eye. He did have test spots done in Portland in the beginning (7 pulses) with out g.a. I think it was harder on me then him...but it still hurts. I know Hank has a very high tolerance for pain. Did the doctor say future laser would be under g.a.?

Good luck.

Corinne
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  #45  
Old 11-17-2005, 08:49 PM
meganm
 
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Default Re: Laser treatment

Hi Corinne,

Dr. Sidbury performed the tests yesterday, we like him a lot but are very sad to hear that he is transferring to Boston Children's in February. He'll perform the first laser treatment in January and we'll meet his successor, Julie is her first name I don't know her last, who he highly recommends. We're actually going to the Vascular Anomolies Clinic at Boston Children's in 2 weeks for a 2nd opinion on the laser treatment schedule. The recommendation from Dr. Sidbury in Seattle was for her to go under g.a. and start with the face, every other month, for 6-8 treatments and then see what happens. Not sure when they'll work on the arm, hand, neck, back and chest, he said we'd have to see how much she could handle at one sitting.

After reading other people's postings I think g.a. is the best course, her PWS is so big I don't think numbing cream would suffice, plus holding her down was pretty traumatizing for me and my husband. Going under g.a. so many times at such a young age is a little scary for us but we just have to trust our doctors and hope that when Kate is older she'll be glad we put her through all this.

I just have to say thank god for the internet, it has been so helpful and therapeutic for me to come to this website and read people's postings and hear their stories. Friends and family try to say the right thing but they don't understand, and it's helpful to see other people with similar conditions and seeing how well they are handling it. We love our little girl more than words can express and just want to make sure we're doing the best things for her now and that in the future we'll be able to talk to her about her PWS in a way that makes her a confident, happy young woman.

Megan

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  #46  
Old 11-17-2005, 09:17 PM
nickbar nickbar is offline
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Default Re: Laser treatment

Megan,

I totally misread your message and thought you said Dr. Perkins was moving. He is not. Oops sorry. I would recommend Dr Perkins also for an opinion.

Corinne
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  #47  
Old 11-19-2005, 07:25 PM
hankbartenbach hankbartenbach is offline
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Join Date: Oct 2002
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Posts: 533
Default Re: Laser treatment

Hi Megan,

i agree with Corinne. I do have a high tolerence to pain. The laser treatment will hurt, but only for a short time with the V-Beam Pulse Dye Laser.

If you are interested in another opinon closer to home I would suggest checking out Dr. Perkins or someone in CA.

After reading the postings, from what you discribed about your daughters PWS I think the condition you where thinking of is KT syndrome not KTW (but I could be wrong). KT syndrome is related to Sturge-Weber Syndrome (SWS). A few componants of SWS is KT on the limbs, glaucoma, seizures, and PWS on the brain. I have SWS but only PWS on the brain. I grew out of my seizures when I was two and will always have the risk of them coming back. I will also always have the risk of glaucoma forming as well. The extensiveness of your daughters PWS sounds like she might have SWS but the only way to tell is by having a MRI with and without contrast. I strongly recommend getting to the opthmologest to get Kate checked for glaucoma. Going untreated can cause damage to her vision. Your opthmologest will be able to tell you how often she will need to get checked after her first appointment depending on her risk level.

There is a SWS section of this group. I am sure Glenda will chime in to talk more about it. If not I will let her know you might be interested in more info. Also, I wrote a paper on social issues that you might be interested in for the future. It is my website at www.hankspws.com

If there is any questions you might have please ask we are here for you.

Hank
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  #48  
Old 11-19-2005, 07:50 PM
meganm
 
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Default Re: Laser treatment

Thanks! We will contact Dr. Perkins and see if we can meet with him. We're meeting with an opthamologist at Seattle Childrens on January 10 to see if she's at risk for glaucoma. You're right Hank, it's KT Syndrome not KTW, I have trouble keeping all these names straight after doing so much research and reading about so many different possibilities!

Thanks for your replies, I'll be sure to make a posting in January with the findings from the opthamologist and MRI.

-Megan
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  #49  
Old 11-19-2005, 08:07 PM
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swsc swsc is offline
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Default Re: Laser treatment

Megan:

I'm with the VBF branch, Sturge-Weber Syndrome Community. Please let me know if there is any way we can help. http://swscommunity.org

Please feel free to contact me at any time.
Glenda
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