My story...

sweet pea · #1 07-11-2006, 08:28 PM

Well i don't even know that much about my own story, but ill tell you what i know. My mom has always kinda kept me in the dark about all of it.

Well i was born in November 1989 and was a normal healthy baby girl. At the age of 1 and a half my mom noticed something was wrong. My parents took me to my pediatrician but they did not know what was wrong and sent me to a childrens specialist who deals with all kinds of child diseases and such. He diagnosed me with Lymphangioma on my right hip area.

After that i went throungh many surgeries to get rid of it. The first couple of surgeries he did with a laser, but it just came back. Then he had to make incisions and cut it out. Im not really sure how many surgeries i've had. Though i know its more than 5. At the age of 2 and a half i had a major surgery. I stayed in the hospital for 3 weeks, though partially because the nurse messed something up with the drain i had.

I recently had my last surgery this past christmas break. I stayed in the hospital for a couple of nights and then i got to go home and rest. I missed a week of school due to the fact that i couldn't really walk because it hurt so much.

Every week from then on i went in for a check up on how i was doing. A couple months after the surgery, in April, i went in for my check up and he told me it looked great and that i would no longer have to see him. The specialist i have had since i was 2 is now no longer part of my life. I was so excited to finally be done, though i was kinda sad to leave him. I had seen my specalist so much, he was kinda like a second dad.

I've been so lucky to have so many people care so much about me. With my family and friends always helping me every step of the way. I don't know what i would've done with out them. Its hard having to go through something hard alone and this website is great because you know your never alone. : )

sweet pea · #2 12-31-2009, 06:59 PM

well my "last surgery" wasn't my last one. A year and a half later, I began having pain associated with my malformation. My specialist said it was beyond his expertise and sent me to another doctor. I went to over 12 different specialist before finding one who would help. It was definitely a frustrating time. Though the ending result with the specialist I now have was great. He did the surgery along with his partner and another pediatric surgeon helped as well. The malformation looks a LOT better now, thanks to him and the severe pain I had is gone! About a year after that a spot had become very painful, so only that small "hard spot" was removed. It's been 4 months since then and I am pain free from it, so far so good. I couldn't have asked for a better specialist, he is awesome. My family support system is still amazing, and I also now have an amazing supportive boyfriend who's been there for me. I feel so blessed to have so many wonderful people in my life.

missy · #3 01-01-2010, 02:33 PM

Well, hi!

Thanks for the update. Sounds as if you had an amazing outcome!

Glad you're doing so well. It's good to see you around!

Missy

ongsyen · #4 01-02-2010, 02:52 AM

I have a 2 months old baby with hemengioma on her nose.
We are at Malaysia, do you know any expert I may refer to?

nickbar · #5 01-02-2010, 05:48 AM

Hello, I am looking for someone in Malaysia/Singapore.

nickbar · #6 01-04-2010, 06:28 AM

These are the specialists we have listed on VBF ASIA. You can visit this site by clicking on "FIND A CHAPTER" on the top of this page.

Dr. Wang Peilin
PO Box 9720
Beijing 100101 P.R. China
8610-66356729-2104
Dept. of Stomatology
Email: wangpl@yeah.net

Jinjin Wu
Director of Dept. of Dermatogoloy
Daping Hospital
Third Military Medical University
Changjiang Branch 10th,Chongqing
400042, P. R. of China
e-mail: wwjfy@mail.tmmu.com.cn

Prof. Guoyu Zhou, M.D. (laser dermatologist specializing in birthmarks treatment with photodynamic therapy)
Associate Director
Medical Laser Center
Ninth People's Hospital, Shanghai Jiaotong University
Shanghai, China
Tel: +86-21-6313-8341 ext. 5205
email: guoyuzhou@hotmail.com

Qian Liu
Office of Vice President
Gannan Medical University
1. Yixueyuan Road, Ganzhou, Jiangxi 341000, P.R.China
Tel:+86-797-8261568(office)
+86-797-8261569(home)
+86-18907979876(mobile)
Fax:+86-797-8269600

Japan
Philippines

Marjorie F.U. Yang, M.D.
Dermatology and Laser Surgery
St. Luke's Medical Center
Rm. 1004 South Tower, Cathedral Heights Building Complex
279 E. Rodriguez Sr. Blvd., Quezon City
1102 Philippines
(63-2) 723-0101 loc. 2004
mfyang@hotmail.com