Pilonidal Disease: An Explainer

I am on a mission to educate patients and the surgical community.

Many surgeons choose to treat pilonidal patients with disfiguring, wide-excisional operations hoping to completely remove the elusive cyst. While many doctors and patients commonly call Pilonidal Disease, a ‘pilonidal cyst’, the term is a misnomer and indicates a misunderstanding of the disease, which leads to radical and unsuccessful ‘pilonidal cyst’ surgeries.

The problem is that many of these radical operations for pilonidal disease:

1) often don’t work and can lead to a recurrence as they fail to shallow the cleft, eliminate dead space under the skin surface, and don’t lateralize the incision, and

2) even if they eventually fix the problem, often the recovery is long and requires extensive wound care which is often miserable for the patient and his/her caregiver.

If these operations fail, they often make the problem worse. Moreover, few surgeons want to tackle Pilonidal Disease. Even fewer care to operate on patients that have undergone failed surgery from other surgeons.

(see our Illustrated Guide to Surgery and Treatment for how the successful Cleft-Lift pilonidal surgery is performed)

When I started my Colon and Rectal Surgery fellowship in 1999, I was reluctant to treat patients with Pilonidal Disease as I had seen the product of many radical procedures during my training. The turning point came during my fellowship when I expressed this concern to a mentor who knew of “a better way” to treat the disease, and he invited me to learn from him.

Through my fellowship experience and visits with father-son surgeons John and Tom Bascom (John was the developer of the Cleft Lift Procedure), I learned that the Cleft Lift technique made sense and worked. It was a true game changer. I performed hundreds of Cleft Lift Procedures over the following decade and increasingly difficult cases obliged me to innovate variations and my technique has evolved over time and continues to do so.

I am convinced that the Cleft Lift Procedure is the best procedure for all forms of pilonidal disease requiring surgery. I have performed more than 1,500 cases since 2000. While it’s impossible to have perfect results, I have been able to make the Cleft Lift Procedure quite reliable and have less than a 1% reoperation rate. For those patients who did require a second operation, so far, they are all cured. So, the Cleft Lift Procedure seems to be a curative operation.

So why do I want to operate on patients with difficult pilonidal problems?

1) I truly am gratified when I am able improve a patient’s quality of life, and

2) the operation that I perform cures almost every patient, even when they’ve failed prior surgical attempts.

It gives patients their life back!

I am committed to helping cure pilonidal patients of their disease, and, in the long run, wish to change the way other doctors treat patients with pilonidal disease (often incorrectly called pilonidal cyst) as I strongly feel that we surgeons need to do a better job in the way we treat patients with pilonidal disease. I am committed to helping teach and disseminate this technique.

Pilonidal disease overview

Pilonidal disease (pie-low-NIE-dul), a chronic infection of the skin and underlying tissue near the tailbone, is a common disorder. It typically affects people in their teens, 20’s, and 30’s and often disappears by the age of forty. In its most severe form, pilonidal disease can be very debilitating, causing daily discomfort and limiting activity. Most operations reported to cure the disease are not reliable. Many sufferers of pilonidal disease become discouraged in their search for curative treatments as many surgeons, and medical practitioners continue to misadvise patients to consider disfiguring procedures with high recurrence rates.

This website provides basic information about pilonidal disease and its treatment. The most reliable and successful surgical treatment to date, the Cleft Lift procedure is discussed in detail.

Why is a pilonidal cyst not really a cyst?

A cyst is an epithelial lined sac (like your skin or inside your cheek) that has been present since you were an embryo.  Pilonidal disease is not pilonidal cyst disease because it’s an acquired condition.  Pilonidal disease (AKA pilonidal cysts) are not congenital.

How this website can help?

You are likely viewing this website because you or someone you care about has pilonidal disease. Perhaps, you have already had surgery for a pilonidal abscess (often incorrectly referred to as a cyst), and the procedure didn’t turn out quite as well as you or your surgeon had anticipated. Maybe you’ve been told that you need surgery for a chronic pilonidal abscess/sinus or a recurrence after surgery and you want to educate yourself about the best options. This website should help you with this difficult decision: what the best surgical option is for 1) a chronic/recurrent pilonidal abscess/sinus, or 2) an unhealed wound or recurrent pilonidal disease after one or several pilonidal surgeries.

While this site provides a complete overview, it is not intended to be comprehensive. Excellent additional information including testimonials about specific procedures and chat rooms can be found at www.pilonidal.org.

Pilonidal Surgery

This website should help you with this important decision: what is the best surgical option for…

1) Primary disease with multiple pits.

2) Primary disease with large pits.

3) Persistent or recurrent disease.

4) An unhealed wound after one or several pilonidal surgeries.

To schedule a consultation please call our office.  If you live far from San Francisco and wish to schedule a consultation and surgery, please go to the Traveling for Surgery page for instructions on how to plan your visit.

Causes and symptoms of pilonidal disease

A nest of hairs Pilonidal disease is not a cyst (an epithelial-lined sac), it is an abscess (a cavity filled with infected fluid and/or debris). The fluid, if present, is infected fluid called purulent material or pus, and the debris is usually loose hair.  In fact, pilonidal means “nest of hairs.” Around half of all pilonidal abscesses contain hairs. The hairs are hairs from the cleft midline that have pulled inwards from their root end (not ingrown) through dilated, destroyed hair follicles, or shed from other parts of the body (such as the scalp, back, etc.) and then become lodged in an unusually deep cleft near the tailbone. They are not ingrown hairs. This is why shaving the affected area is usually of little help.

Symptoms of pilonidal disease

Pilonidal disease can cause a variety of symptoms which may happen all the time, may come and go, may be mild, or may be severe. These symptoms include:

Be aware that most physicians are not trained to differentiate pilonidal disease from a perianal abscess or buttock abscess. If you suspect that you have pilonidal disease, it is important to consult a Colon and Rectal Surgeon for a proper exam.

Tip of the Iceberg

Like the tip of an iceberg, Pilonidal Disease can fool parents, patients, and even surgeons. Sometimes, a case that appears small and benign harbors a large abscess under the surface as in this case as seen in the photo below.

Why does Pilonidal Disease occur near the tailbone?

Pilonidal disease affects a very specific area of the body called the natal cleft or intergluteal cleft. Colloquially it’s the “butt crack”. The natal cleft is the 5-9 inch valley under the tailbone that is hidden by one’s buttock cheeks when standing. It is bracketed above by the top of the buttock sulcus (crease) and below, by the anus. The coccyx (tailbone) lies within it, and the edges (marked by the dashed lines) are the point of contact of the buttock cheeks when one stands.

Marking out the procedure: Illustrated

This photo shows as pilonidal patient lying down with head up and legs below. The dotted lines are the edges of the buttocks cheeks that touch when one is standing.  So, the space between the dotted lines (in purple) demonstrates the depth of the natal cleft.

The cleft lift procedure reshapes a patient’s buttocks similar to the diagram and images above: Before surgery, the cleft is deep, moist, and poorly aerated – a perfect environment for infections to fester.  The arrows indicate where the buttucks cheeks touch when relaxed or standing. After surgery, the shape of the area is changed much like the landscape shown above, from a sharp valley to a rolling valley.

After Cleft Lift Surgery, there is a well-aerated, shallow trough between the relaxed buttock cheeks. The incision (indicated by the *) is off to the side and in the open air so it will heal rapidly. The exposed trough resists infections, as the area is dry and exposed to the air.

The abscess is believed to start when skin in the natal cleft stretches during sitting, breaking hair follicles and opening a pore or ‘pit.’  As one stands up, the movement causes a suction that pulls the original hair of the follicle or loose hair inwards from its root end (hair have barbs that prevent the apex of the hair from inserting) and debris into the now open ‘pore/pit’. Once lodged, the hairs can cause irritation if not expelled by the body or removed in time. Chronic infection can develop in this hidden area and lead to the formation of tunnels (sinuses) from under the skin to areas outside the natal cleft. Additional ‘pits’ can then develop leading to persistent or recurrent symptoms of pain, swelling, drainage, and even odor. Often, the pit’s become intermittently plugged with Keratin (a protein from the outer layer of skin), which encloses the infection, making it worse. Many people with pilonidal disease have or develop ‘divots’ in their natal clefts, which further encourage the deposition of debris and the formation of more ‘pits’.

Risk factors for developing pilonidal disease

The deep clefts of people with pilonidal disease

Pilonidal disease typically develops in people with very deep natal clefts that have poor air circulation as a result of the deep cleft. These deep clefts remain moist and airless – a perfect environment for infections. The only way to see pilonidal disease in these individuals is to part the buttock cheeks enough to visualize the pores within the valley of the natal cleft. The sinus opening, if present, is usually visible at the top and to one side of the cleft. Many healthcare practitioners mistake the sinus opening as the cause of the disease, but it’s the result of the disease, which is caused by the dilated pores.

Age and pilonidal disease

Pilonidal disease is common among young people. The disease most often affects teens and young adults.  For unclear reasons, many, but not all, affected people will stop having symptoms of untreated disease by their 40s.

When pilonidal disease affects normal life

Pilonidal disease or failed surgical procedures aimed at treating the disease can lead to many months or years of discomfort, disability, and suffering. Due to severe symptoms of pain or discharge, affected individuals may have trouble sitting for long periods of time, miss school or work, refrain from sports, or avoid close contact with friends.  Embarrassment from the condition may prevent individuals from using common locker rooms or wearing a bathing suit. Unsuccessful surgical procedures may force individuals to remain at home and pack wounds in areas they can’t see or easily reach.

Read more about Pilonidal Disease from this chapter excerpt by Dr. Sternberg, published in a prominent surgical textbook. Click here to read it. This Chapter (pp 293-301) was published in Current Surgical Therapy 11/E, 2014, (ISBN 9781455740079), Cameron et al Copyright Elsevier.

Meet Your Surgeon, Dr. Jeffrey Sternberg

After many years performing major abdominal operations including open and laparoscopic resections for colon cancer, rectal cancer, Crohn’s disease, and Ulcerative colitis, I have chosen to concentrate my efforts in a few highly specialized areas of surgery where I feel I can make the greatest positive impact on patients.

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