Turner Syndrome Support Group

Turner syndrome encompasses a number of chromosomal abnormalities, of which monosomy X, is the most common. It occurs in 1 out of every 2,500 female births. Instead of the normal XX sex chromosomes for a female, only one X chromosome is present and fully functional. In Turner syndrome, female sexual characteristics are present but underdeveloped.

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natalie198807 12/29/2012

My name is Natalie, on the 13th of December I had a z-Plasty by an amazing plastic surgeon to correct my webbed neck. I am in pain now but I'm telling you I already feel 100% better about myself. I was made fun of all throughout school about my neck and never really understood what it was until I was older. I knew I could have the surgery done at any time but wanted to be in a space mentally to where I was not doing it for anyone but myself and to better the way I FEEL about myself. I wanted to completely and utterly do it for me and no one had ever said a bad word to me about it or made fun of me for it. The doctor has said it could take up to 12 weeks to heal correctly and I'm still in pain but I've never felt better in my life. No one has to respond (even though I hope someone does because I would love to talk about it) I just want people to know this is an option. I would not recommend the procedure for a young girl though. I have the best support system in the world between my parents and friends. This is a rather long rant and its 7 a.m. And I still haven't slept , but I wanted to start a conversation about my surgery.

Has anyone else had this done ???

deleted_user 02/03/2014

Hey Natalie,
You'posted this over a year ago and I'm so glad you did. I was born with a webbed neck and grew up completely self conscious about it. i'm 24 and wish I could say I was older and wiser and felt more beautiful and confident enough in myself to wear my hair up in the scorching hot summers, but I can't. I avoid any situation where I have to put my hair up (that means all sports and outdoor activities in the summer), I hate anyone even glancing over at my neck, and I just feel ugly. I started a new job that I love and I'm beginning to experience some stiffness and discomfort in my neck these days. I really want to have surgery but I'm scared about the cost and how much time I will have to take off. How are you feeling? And I'm so glad you posted your story by the way! Out of curiosity how old are you now and where do you live?

natalie198807 02/04/2014

i am 25 years old and I live in Tennessee. I had my surgery at Vanderbilt Medical Center. If you are diagnosed with Turner Syndrome and have a good insurance policy ( i have blue cross/ blue shield) it should be completely covered... i think we only had to pay like 300 dollars. It breaks my heart to think of paying for this out of pocket or even more that what we had to pay. My insurance has been great my whole life. HENCE WHY IM SO PRO-OBAMACARE. I did the same things you did before I had my surgery. I would play softball with my hair down and be sooooo hot and people would say , "why don't you put your hair up" and I would just shrug my shoulders. I had the surgery (12-13-2012) and my doctor released me as of like march of 2013. I am still somehat numb from the surgery even know (2-4-2014) which, he said was completely normal... the numbness is not severe anymore at all and I can tell it's getting better... they had to do some MAJOR cutting to my nerves from my neck so it's the nerves that are healing. I can answer any other questions about this that ANYONE has... I have also been going to therapy every once in a while (there has been a lot of changes in my life in the past 6 months, but that has nothing to do with the surgery or anything) I have been working on ME ever since the surgery and I recommend anyone else do the same.

deleted_user 02/18/2014

Natalie, thanks for getting back to me! I'm seeing my family doctor next week to see get some tests done to see if I have turners or anything else. I'm pretty set on getting the surgery done and really have no gauge on how much I'll have to pay if it's considered purely cosmetic the government (Canada) won't pay for it. Would you by any chance have any bills saved to see what the insurance companies had to pay? I wanna get the surgery done so badly I just want to make sure I'm prepared. Also, do you wear your hair up now! :)

Webbedtoo 07/08/2018

I want to get it done. I also was bullied by family and all through school. I wish I could afford it. Though.I believe it would so wonders for my self esteem. I think it's why no one really wants me They would be embarrassed of me.

Danu 02/24/2020

Danu 2/24 2020, My girl is 12 and will be 13 in a few months. I am beginning to see how she is protecting her webbed neck. I new early on this would be a concern as the girls would develop and start noticing her looks. I was at an IEP meeting and her PE teacher said she was very cooperative the first one their to dress into her PE clothes. I was sad to figure out that she was their first to change her clothes before the others would see her. I would love to see her get the surgery but don't know how to approach her with the idea. She has a twin sister that is normal and it is hard for them to hang out together because of the peer pressure. If it was me I would have it done! but I don't want her to go through a lot of pain. Is it worth it?

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