Vascular Birthmarks Foundation Forum

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-   -   Cure for Port Wine Birthmark (http://birthmark.org/board/showthread.php?t=1662)

Simin 11-12-2005 06:41 AM

Cure for Port Wine Birthmark
 
Hi Everyone: My name is Simin and I am new one. My grandson only 2 months old has been
diagnosed with Port Wine Birthmark. He has it on his mouth and chin and a little bit of it on the corner of his tongue. My daughter is very worried for her baby. A specialist in San Francisco area said he must have laser surgery when he is six months old. The Doctor was
not friendly and did not explain or answer many of her questions.

First I would like to know more about Dr. Waner in New York and any contact information as
phone number or web site? Is he better then the California Doctors?

Second I would like any information on the mentioned web site that can help with travel and ticket expenses since my daughter lives in San Franciso it will be very expensive to go to
New York.

Is it possible for some cases to get complete cure with the laser treatments?

Must you take the laser treatments for life to keep the birthmark away.

My daughter and I are both in worry what may happen. Any help would be appreciated.

Simin

hankbartenbach 11-12-2005 04:18 PM

Re: Cure for Port Wine Birthmark
 
Hi Simin,

First of all welcome to the group.

My name is Hank 23 withfacial PWS/SWS. (Port Wine Stain/Sturge Weber Syndrome)

As of right now there is no cure for PWS. Depending on the type of PWS your grandson has depends on how effective laser treatment will be. The darker (purple) it is the more blood that is involved the less effective the laser treatment is. Ever case is different so it is really hard to say. This is just my opinion I am not a doctor.

I am a current patient of Dr. Waner. My personal opinion for you is to use Dr. Waner as your last result. It is very expensive, plus travel expenses. There are several very good doctors in CA that have the same laser machines Waner has. If you go to the resource section and under find a physician you will be able to see doctors from CA. Dr. Waner is in there as well under NY. I have seen the doctor from the University of San Fransico. She has a very good dermatology department. I would suggest going there first. If they can not help there is a doctor in San Diego that is highly recommended from several people on this group. (is on the list) Someone will chime in to talk more about him. There is another doctor in Irvine that is recommend and is very good as well.

If you would like to compare your grandson's PWS with mine you can see pictures of my PWS on my website www.hankspws.com The level of my PWS is a live long condition until technology gets better.

I hope this helps and if you or your daughter have any other questions please ask we are here for you.

Hank

nickbar 11-12-2005 06:17 PM

Re: Cure for Port Wine Birthmark
 
Hello,

I would encourage you to contact Dr. Nelson (he is in the ask an expert section on this website). He is in Irvine California and hosted the pws conference.* *He has many lasers he uses to customize the tx. best for each case and even may use more then one at an appt.* He is also an engineer and has developed some great devices to help get more light into the pws.* He is very good at responded to email with in 24 hours if he is in town.* This would be a lot closer for you, less expensive and he is top notch in the field.* Dr. Waner is awesome...but I agree it isn't necessary to travel that far for laser tx.* Dr. Waner even found someone closer for use for my son's laser tx. (we are in Washington State).*

Experience is key with laser tx. and Dr. Nelson has that experience.*

The "grade" of the pws will determine how successful the fading of the stain. Some low grade stains have been reported to not return (yet) on adult patients... only time will tell... many pws require annual tx. to maintain the fading. Dr. Nelson would be able to give you more details.
Corinne

clairesmum 11-15-2005 08:18 AM

Re: Cure for Port Wine Birthmark
 
Hi Simin

My daughter has a facial pws that includes her chin and in it inside her mouth, on her gums on the right hand side and the whole of her bottom lip and right half of top lip. Claire has never had any problems. I will say that her bottom lip has become enlarged over her 3 years of life, but it is not giving her any problems at this stage. Her teeth on the right side also came through earlier than the left side.

Claire has had 9 treatments so far with the Candela V-Beam and the chin has faded considerably compared to before any treatments.

All the best to your daughter and grandson, and although I understand your daughter will probably be going through a bit of a tough time at the moment (I did for nearly 2 years) your grandson will be in good hands with the doctors you have available in America. Get your daughter to ask all the questions she has to us and the doctor, it really does help eleviate the stress of the situation.

Best wishes
Catherine (Claire's mum - facial pws 3y1.5m)

Simin 11-24-2005 05:06 AM

Re: Cure for Port Wine Birthmark
 
Hi All:

I just wanted to say how greatful I am for everyones kindness and prompt response regarding my grandsons PWS. Clairesmum, Nickbar, and Hankbartenbach all of you shared
so much helpful tips on PWS that I would have taken many years to understand.

Happy Thanksgiving to all. I will share any information I can to help as you have helped me.

Simin ::)

alexasmommy 11-26-2005 06:37 AM

Re: Cure for Port Wine Birthmark
 
Hi Simin.
Everyone gave you great advice. I live in New York and my daughter sees Dr Geronemus. I am aware that I am so fortunate that I am accessable to Dr Geronemus and Dr Waner.:)
Dr Nelson is wonderful also. Your Grandson would be in wonderful hands.:)
My daughter has had very good fading so far with laser treatment. Corinne is 100 percent right--every pws is different and only time can tell for sure if maintance will be needed.
Best of luck to you......
If you have any more questions, please do not hesitate to ask....
Elena

QCBirthmark 12-13-2005 08:38 PM

Re: Cure for Port Wine Birthmark
 
Not sure if you still need this info or not, but if you contact the Shriners they can do these surgeries for free and if you find a good temple (we have an excellent one in our area and I can get you info for your area) they will pay for the airplane tickets, transportation...(taxis buses whatever) and food. I love the Shriners can't speak enough about them.

Jeni


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