BORN WITH GIANT HAIRY NEVUS, now living with huge scars..:( - Vascular Birthmarks Foundation Forum
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Old 10-22-2010, 07:00 AM
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Exclamation BORN WITH GIANT HAIRY NEVUS, now living with huge scars..:(

I was born with a giant hairy nevus on my right shoulder and top right corner of my back. I had several skin grafts to remove it in pieces. Skin was taken from the side of both my upper legs and also a little bit from the bottom of my bottom.
So I live with scars in all those places. The worst scar is obviously where my birthmark was located. It looks like a really bad burn. its bumpy, the skin is not smooth, the skin is even kind of shiny-ish and discolored in some places.
I am now 23 yrs old. My first surgery was at the age of 4 or 5 years old.
I have lived with depression my whole life. I only started taking medication for that at about 19 yrs old. I HATE my scars and never wear sleeveless shirts because I hate answering people's questions and when they stare...
My life has been a constant battle trying to live with my traumatic experience and big scar. I have always been different than the other kids. i matured much earlier than the other kids too. And i am extremely sensitive.
I am very screwed up psychologically, I have so many thoughts running through my head constantly. I am not truly happy, and it is very difficult for me to have relationships with people. Its really hard for me to understand why I am sad, let alone a friend or bf trying to figure it out and help me. I tried seeing various psychologists regularly.
I am a full time university student, im 23 yrs old, work part time, try to be social and go out with friends, exercise regularly , play soccer and excel at most sports, eat mostly healthy, love to do art and paint and am very artistic.......I TRY very hard to lead a positive, happy life, as you can see I try to do many activities to make me feel better. Medication really helps me by stabilizing my mood and allowing not to have explosions and breakouts of extreme emotion.And it helps me be less sensitive to everything. Deep down I am still at war with my shoulder and it stops me from being a fully confident person. It is an extremely hard obstacle to get over.
I know that I am beautiful, thankful for good things in my life, that other people have way worse problems, that i shouldn't care what other people think....I KNOW ALL THIS STUFF, I KNOW!! I cannot help the way I feel and I still feel sad deep down and find it very hard to live with my shoulder and the traumatic experience associated with my shoulder.
Anyway, this is what being born with a giant hairy nevus did to me.
My plastic surgeon and dermatologist never suggested psychological help and I find that disgusting because even if you remove the birthmark from my shoulder so that i will not develop milenoma, I might have killed myself from the trauma. So what good does spending all that time on my surgeries do if in the end I end up killing myself. (I do not want to commit suicide, i am just using it as an example).
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Old 10-25-2010, 01:40 AM
kaykay kaykay is offline
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Join Date: May 2006
Posts: 233

oh damn its like reading into my own mind LOL

Its seems you are doing all the right things. Yes you would think that a plastic surgeon and dermatologist would suggest some therapy for scarring like that.

its great you are active. This helps take up time for thought. But you still have those moments when you can't stop thoughts. You are a human being. Its up an down. I try to take the good days and enjoy them and the bad days deal with it best i can. I'm not gonna pretend to be happy all the time. I think i deal with this ok. one day at a time.

keep doing the things you do. its hard to find peace with yourself but when you have those moments enjoy it and allow yourself to live.
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Old 12-12-2010, 03:19 AM
momof3inpa2009 momof3inpa2009 is offline
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Join Date: Dec 2009
Location: PA USA
Posts: 112

You said the perfect words: "I know all this stuff." People can give you advice after advice, advice I'm sure you already know you should be doing and you probably wish you could but you can't help how you feel. I guess all you can do is find a way somehow to come to terms with what you are living with. And nobody can tell you how to do that, that is something you have to figure out on your own. Vent...vent as much as you like, I'm sure friends and family and even strangers will listen.
Deep hemangioma on left eyebrow towards nose
Started propanolol Feb. 11th, 2010
Off of propanolol aprox. June 2011
Takes 3 doses per day at 1.3ml
2nd Weaning of prop. not a success back on it March 22. Only one dose of 1.3ml now- 19 months old Did Timolol gel for awhile, stopped, & back on - 4 years old. Off of Timolol -doesn't seem to be doing anything. Surgery was a success!!! April 2014
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Old 01-07-2011, 02:24 AM
Rachel May Rachel May is offline
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Join Date: Jan 2011
Posts: 5

You poor thing... I have so much sympathy for you. Like the previous post says, let it all out! It's such a difficult thing to live with and come to terms with, and obviously it will have a deep psychological effect on you. I commend you for all the efforts you make to keep active, healthy and social, and for getting professional help.

Your practically writing the story of my life here! In my own experience, its not the physical pain or the operations that is the worst, its the effect growing up with a physical malformation has on your self esteem. It can be very damaging and traumatic, and very hard for people without a similar problem to understand.

I could tell you all the usual "stuff", but as you said, you know it all. We've all heard it all. What I can tell you is that I, and many others out there, have had similar experiences and know what you've been through and how tough it can be. And I'd also like to remind you that you can eventually overcome these feelings. Obviously you are a very strong person because you are fighting your mental health problems, and havent let them stop you living a busy, healthy life. I can tell from the way you wrote your story that you are also intelligent. Dont forget that there are other people out there who are going through the same thing - you're not alone. Reading your story was like reading about myself. Thanks for being brave enough to share it,.
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Old 01-25-2011, 04:52 AM
sweet pea sweet pea is offline
Senior Member
Join Date: Jul 2006
Location: Southern California
Posts: 111

It really takes time to come to terms with what you have... I'm 21 and finally feel more at peace with my own body. I have a lymphatic malformation and have been through several surgeries, leaving me with many scars and a physical deformity. I have a 9 inch incision line that goes down my right thigh, that thigh is smaller than the other one, and multiple scars on my right hip, along with scars on my left shoulder. It's not exactly "pretty", but I am ok with it. I used to hate my body and was tormented by people at school in high school and jr high. I feel much more at peace in college and have found friends who don't mind how I look and care about me no matter what. We all have things we don't like about our bodies, but we have to learn to accept ourselves for how we are. You can't undo or change what happened, so it comes down to if you can accept yourself or not. It's good to vent, but you also have to pick yourself back up and learn to live your life. Don't miss out on what is going on now just because of some scars or you may regret it later in life.
what makes you different, makes you beautiful
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