TSSUS is the largest organization – worldwide – supporting the Turner syndrome community.
The Turner Syndrome Society of the United States: Advancing knowledge, facilitating research, and supporting all those touched by Turner syndrome.
Physical Health
Neck Webbing
and Low Hairline
Neck webbing and a low hairline are common physical characteristics found in those with
Turner syndrome. Neck webbing is present at birth and is not something that develops over time.
Some individuals may experience constrained neck movement while others opt to surgically
intervene to lessen the appearance of these traits.
Neck webbing and a low hairline result in:
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Loose skin at the back of the scalp, from ear to ear
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A shortage of skin from the top of the neck to the bottom
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Soft tissue layers beneath the skin on the head, becoming secured by fibrous bands that stretch
from behind the ears to the shoulders. The bands may limit the neck from moving effectively
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The shoulders appearing elevated, although no muscles are involved in neck webbing
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Hair covering the webbed skin at and below the hairline
Causes of neck webbing and low hairline could include:
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The lymphatic system not forming properly before birth
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The soft tissues in the back of the neck stretching due to fluid accumulation
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The skin stretching from swelling then sagging, resulting in a webbed appearance.
Treatment options
You may accept your appearance and undergo surgical treatment options. Remember, you may be your worst critic and notice differences in your appearance more than others. Finding the best haircut may allow your long thick hair to hide your neck or you may choose to shave your hairline and even add a design to show off your uniqueness. Surgery is a risk as outcomes vary. Some with TS highly recommend surgery while others feel the surgery didn't improve their appearance as much as they expected.
Physically repairing neck webbing may restore the function and form of the neck and may enhance your psychological well-being.
Physical characteristics associated with TS that may be responsive to plastic surgery include:
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Neck webbing
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Low hairline in TS may extend down the neck to shoulder level
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Eyelids drooping; optional techniques include the del Campo technique and VW-plasty variations. Scarring is common.
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Rotated ears
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Small chin
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Moles
The best time to surgically correct neck webbing is after a child is potty trained and prior to school age (4-5 years), to avoid social stigma. Surgery may be performed at any age after a thorough consultation with a craniofacial surgeon.
The goals of surgery for neck webbing are to create a normal neck contour, re-establish a more normal hairline, and remove fibrous bands to prevent recurrent webbing while avoiding obvious scarring.
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A lateral z-plasty surgery disrupts fibrous band but leaves obvious scars and an abnormal hairline
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A pullback re-drapes the webbed skin to replace the skin removed from the bottom of the scalp. Various incisions may be used and are referred to as “Butterfly, “V-Y”, and “T”.
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Tissues expansion is a staged procedure in which skin is stretched by placing “balloons” under the skin that are filled with fluid over 2-3 months to avoid tension. The skin is then re-draped like in the pullback technique.
Despite results, surgical repair may require later revisions if there is
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Recurrent webbing due to incomplete removal of the fibrous band
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Keloid scarring, widened or thickened scars, due to the tension on skin closures
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A low hairline remains due to the inability to remove all hair-bearing skin during the surgery
Treatment options for hair removal in TS
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Shaving or hair removal products produce a temporary result
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Electrolysis
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Laser hair removal
If you would like to recommend a plastic surgeon for neck webbing or hairline surgery, please contact us so we can add them to the doctor directory. If you have had plastic surgery, please consider volunteering to speak to others considering treatment options.