port wine stain response to treatement - Vascular Birthmarks Foundation Forum
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  #1  
Old 06-08-2015, 07:46 PM
lstory86@icloud.com lstory86@icloud.com is offline
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Default port wine stain response to treatement

Hello. My daughter has a reticulated port wine stain on her leg from the top of her thigh to her ankle on the outside of her left leg. The top part looks like it still has the circles from her first laser treatment, they are faded not anywhere close to the bright purple they once were, which was in February and the bottom part of her leg doesn't look like it responded to treatment at all. It looked like the stain came back over where she was treated. We have a third laser appointment this Wednesday and i just feel like this is a lost cause to have it treated. I know treatment can help make it less noticeable but is there a chance that she wont respond at all to treatment? The doctor said the success rate is around 70% but reading elsewhere i have found that it can be lower than that! I feel so helpless. Please give thoughts and such. Thank you.
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Old 06-09-2015, 04:55 AM
missy missy is offline
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Hi and welcome!

I can't really speak to percentage on treatment options... certain areas of the body respond better than others and every body responds differently. I also know that I've seen some patients that didn't respond as well on the first or second treatment, but then did respond very well on the third or fourth.

Every birthmark is so unique and every person is too.

I'm afraid you have to go with your gut instinct sometimes ... what is best for your child and your family ... and then make your decisions.

I wish we had good answers for you!

Let us know how she does this week.

Missy
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Old 06-12-2015, 08:09 PM
lstory86@icloud.com lstory86@icloud.com is offline
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thanks for responding. she did okay this week. i feel so terrible during the procedure cause she yells and screams cause she is scared. but i would be scared too if someone swaddled me and covered my eyes. the doctor said that we are to come back in four weeks and see how she responds to just coming into the office. he said that we may have to stop treatments until she is a little older because of her safety. She is comparable to a shark thrashing out of the water...poor kiddo i feel terrible but i dont want her to have this huge mark on her leg. but if we need to stop until shes a little older then we will stop...her safety comes first. hope everyone has a good weekend.
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Old 06-14-2015, 08:08 PM
missy missy is offline
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Thanks for the update.

I agree that you might have to wait until she's a little older... if I were her, I'd also be scared and the physician sounds like a good guy.

Keep us in the loop and let us know what's going on!

Missy
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Old 06-24-2015, 04:09 AM
cmannix cmannix is offline
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Hi lstory86,
It's so hard to watch your child get so upset, even when you know you are doing the best thing for her in the long run. I feel you are right in treating early. It's not just cosmetic; you might be helping to stop it from getting worse.
I don't know where you are or who your doctor is, but I do know that not all laser treatments are equal. Applying the right settings and length of pulse is really an art, and some specialists are more skilled than others.

For such an extensive stain as you describe, it might be worth being evaluated by a team of specialists. The VBF has an annual conference and clinic every year where teams of specialists will examine her for free (well, included in the registration fee). This year will be in Irvine, CA on Oct. 10, 2015. Next year will be in NYC. Let us know if you decide to go.
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Old 07-08-2015, 08:08 PM
lstory86@icloud.com lstory86@icloud.com is offline
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thank you for responding. i would like to go to the conference but i live in PA and there is now way i can make it to CA anytime soon. i have tried to email the doctors on this forum a few times and no one has gotten back to me. the doctor we go to is great and he changes the settings of the laser at times. when he increases the strength it takes much longer for her bruises to heal. the normal time of 4-6 weeks turns into almost 10 weeks at times. i also get concerned with the port wine stain because i have read that larger ones can have complications and other syndromes associated with it. does anyone know when these syndromes can become present? i have also read that you can have capillary malformations on organs as well with a port wine stain being so large. as you can tell i read too much but as you can imagine im a first time mom and hate that my child has this. i wish i could take it away from her. i know that this is small in the grand scheme of what could be but i guess i just want someone to be honest with me and tell me if there are any complications that can arise from port wine stains. her port wine stain is on the outer part of her left leg and it is the length of her leg.
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  #7  
Old 07-20-2015, 03:41 AM
cmannix cmannix is offline
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Hello lstory86,
I'm sorry to hear you haven't received a response. Did you go thru the portal on the Ask the VBF Experts page? Who did you try to contact?

There will be a VBF Conference/Clinic in New York City in October 2016.
In the meantime, I hope you feel good about yourself. The fact that you have already started treatments is fantastic. That is the best thing you can do right now.
You can always get a second opinion from Dr. Robert Rosen or Dr. Delfanian with a photograph and copy of MRI report. (My daughter and I see Dr. Rosen every year for her venous malformation in her foot.)
Please send him a message thru the VBF Experts page and let me know if you don't hear from him soon.
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