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-   -   My peruvian PWS (http://birthmark.org/board/showthread.php?t=2076)

djdoc 09-23-2006 05:25 PM

My peruvian PWS
 
My name is Raul Rios Centeno -absolutely latin name- i'm 29 y.o. I have a PWS on my left side of the face, neck and chest. Obviously the fact of being citizen of a non developed country limited the kind of technology for managing my case.
When i was a child, my PWS was called a "benign tumor or vascular tumor" and most of the surgeons did not decided how to handle it. Some doctors suggested to use dry ice on it, others to apply some Vitamin K, and the most famous cancer surgeon at Lima -that the city where i live in Peru- told my mother to not touch it.
The school was obviously so hard, children use to abuse from the weak or strange. In my case it was like that. My mom use to make me feel absolutely normal, and my family do helped with that. The fact was that in managed my live at school probably as normal as any other child, but obviously i just had a few friends.
In 1990, I was a teen with an absolutely normal live, however, a small grease spot appeared on my PWS at the chin. I thought it was the acne and i pushed it. It bleeded, and bleeded a lot. I suposed it had to stop in some minutes. But it bleeded a time, stopped, and restart bleeding. It passed about a week and i noticed it was a kind of grain there it felt hard and i really thought it was time to see a doctor. I came to a neck and face surgeon, and obviously as all surgeons he decided to make a surgery and cut it. It was my first scar on the PWS, my chin will never look the same.
However i decided to have a career, and dentistry was my major. I was at the dental school here in Lima. my medical formation let me to understand more my PWS. It was the 90's and the internet let me to have more information and contact people. I understood that it was more people like me around the world, i have to accept that i was more confortable knowing that all those people had the same feelings and sensations as i did. In 1998 i've contacted a physician at NY, i prefer not to say any name, but he suggested me to go to the U.S. and make a treatment with a laser he started to handle. But it was a kind of problem. My insurance did not cover it, and -have on mind that i was a peruvian student with no money- the costs were around the 10k. I was frustrated to know that it exist a solution, but i had not the money for that.
I finished my career, at 1999, and started on working in the same dental school the next year. I started on looking for treatments here in Peru, it were not. Not laser or any other device. Some friends suggested me to look at Argentina, it was known that Argentina had a nice financial position in South America those years, and probably somebody had bought some laser tech.
I've contacted one physician that told me that he was treating pws with an "intense pulsed light". And the cost was really acceptable. But suddenly my mom was diagnosed with braist cancer, and all of my plans had to be stopped. Once my mom was treated, and finished the radio therapy and chemo therapy i decided to join back my treatment. It was 2003.
The first application of the light, was absolutely painful. I suggested the physician to apply it at the lower lip, face and neck. I liked the spot at my chest and decided to keep it, and manage as a control. 4 hours ago, it appeared some bubbles of lymph, it was so painful. When i looked at the mirror it was a terrible show! My face was completely deformed and it was bubbles all around. When i took the plane for coming back to Lima, the counter employee decided to call the doctor of the airline to know if i can fly or not. Obviously i was the main show of the airport and plane. I really wanted to be at home.
I came to that doctor for about 6 times more. The PWS lightened in about 60% in the neck and 30% at face. But the initials IPL were at his machine, but it was just a Photoderm VL a non coherent light. It finally gave me a big scar at the chin -so next to the first one- and other so next to my ear.
I've decided to stop the treatment 'cause i was not getting too much results the last 2 applications, and it was expensive to take a plane from Peru to Argentina just for 20 minutes of treatment.
On early 2005 i've visited to a dermatologist for the scars. I applied me some nitro, with poor effects, but he told me that my PWS can lighten more if i apply the Candela VBeam. He told that he was not very sure if it was any VBeam at Peru, but he does know that it was about 2 in Chile and 6 in Brazil.
With that new hope i started to contact people in Chile. It was about 500 dollars each application, and probably i needed 6 to 8 sessions. I looked my savings and i just could afford 2 sessions. So i decided to wait, to have more savings and go for all the sessions i need.
On this August 17th, i passed the first VBeam. It was a mock up process. My doctor told me he needed to know exactly what kind of reaction my skin will do. So I passed for the process. The VBeam was awesome! Compared with the Intense Pulsed Light it was just a lil' feeling of the nitro on my skin -thanks DCD for existing- I do presented the purpura. But my doctor considered important to apply most of the shots on my chest -it really worked, i mean, in the spot area i can certify it turned about the 80% in the first time just amazing!- but in the face area and neck he just apply a lil few of them. The reason? well the fact that some scars could appear -more??- and 'cause it's a different kind of skin in the chest and in the face. The results on the face were absolutely poor, he tried there with a 7mm spot, at 7.5 J/cm2 and less than 1ms. So he decided to wait for my response. And as i said before it did not work.
The fact is that on coming 28th, i'll pass my second VBeam try. In this case I've talked to my doctor as a the doctor i am. I told him that obviously it is not my work, but i do want to focus more on my face -believe me, i really don't care about the chest- i do want it clear as the right side. So i push him a lil'.
I'll have more news coming soon.
Best Regards, and if you want to ask me anything, just contact me.
Raul.

eprmo 10-05-2006 08:52 PM

thank you for sharing your story,,,good luck with your treatments

Elissa

hankbartenbach 10-11-2006 10:45 PM

Hi Raul,

First of all welcome to the group.

Sorry I have not responded to your story yet, I do not have internet access and am on my girlfriends internet.

Anyways, I am sure you have seen some of my posts so you probably know somethings about me. If not, I am 24 years old with facial PWS with Sturge Weber Syndrome. If you would like to read my story you can do so by visiting my website at hankspws.com

Being that I have been doing laser treatment since I was five years old I have used four different lasers. All of which I still recommend the V-Beam PDL, because it is the safest and most effective I have used.

My question to you is does your doctor have a 10mm tip for his PDL? If you do not know I would suggest asking. Doctors use this tip for aggresive laser treatment. They make higher mm tips but I have not used them. You can see pictures on my website from before and after laser treatments and plastic surgeries.

I have one other question. Do you have any PWS on your gums? Being that you have facial PWS a lot of people including myself have PWS on the gums, pallet and so forth. Also, if you do not have PWS have you done any research when you were in dental school about people with PWS on the gums or that have problems with teeth growing properly because of their PWS.
The reason I ask is because I know several people adults and children that have a lot of dental issues because of their PWS. My teeth on the top gum were all shifted over two places to the left and had braces and some oral surgery (wisdom teeth remove) and now have porcelen glass teeth caped onto my teeth.

Anyways, I was wanting to know if I could use you as a resource for people that I come into contact with that have dental issues protaining to PWS in the mouth.
Linda Shannon the founder of this foundation might also be interested in your knowledge of this topic.

If you could let me know either way you can just message back here or email me directly.

Thank you, and thank you for posting your story. It brought back memories.

Hope to be talking to you soon.

Hank

Mindie07 10-07-2007 01:50 PM

Thank you for sharing.


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