Hidradenitis suppurativa (HS) affects approximately 1 percent to 4 percent of the U.S. population. The skin condition commonly presents after puberty, and the symptoms can last for years and become progressively worse with age. HS is not life-threatening, but it can have a marked effect on quality of life.
“I have suffered from the disease since I was 18,” one myHSteam member said. “It controls a lot of my life, from shopping to spending time with my family.” Many of those living with HS wonder whether surgical management of this inflammatory skin disease is an option for them.
To learn more about HS surgical techniques, myHSteam sat down with Dr. Hadar Lev-Tov. Dr. Lev-Tov is a dermatologist and an assistant professor at the University of Miami’s Dr. Phillip Frost Department of Dermatology and Cutaneous Surgery.
HS causes painful lumps to form beneath the skin when hair follicles develop abnormal blockages. The result is an immune system response and symptoms including inflammation, swelling, and the formation of tunnels beneath the skin.
The armpits, breasts, buttocks, inner thighs, and groin are commonly affected by HS. These areas experience friction and have a high concentration of apocrine sweat glands.
HS can also cause frequent pain, inhibit physical movement, and sometimes lead to even more serious conditions. “I ended up in the hospital last week with cellulitis and sepsis due to HS,” a myHSteam member said. “I had to be put on IV antibiotics.”
Dr. Lev-Tov said that there is no simple answer to when surgery is appropriate for HS, but noted that there are questions he would ask before proceeding with any surgical intervention.
"I think what will happen more and more is that we will see some treatment [with biologics or other anti-inflammatories] before surgery," he said. "Then the question will be, 'How long do you need to stay on it after the surgery?'"
Starting a person on a course of biologics gives them a good chance to reduce inflammation and lesion size before surgery. This contributes to an overall better surgical outcome for the person with HS, making a procedure easier to recommend.
No clear evidence exists showing that one part of the body responds to surgery better than another, Dr. Lev-Tov said. However, he has seen good surgical outcomes for people with HS on the underarm, where it is known as axillary HS.
"It tends to work better in general," he said. "It's an area that's easier to care for, there's less friction compared to the groin area and the buttock area, you don't have to deal with urine and feces and all that stuff that comes in contact with those areas."
There are several surgical procedures available to people with HS. These include unroofing (also called deroofing), mini-unroofing (also known as punch debridement), excision, laser therapy, and incision and drainage (I&D).
Dr. Lev-Tov explained that in his practice, he mainly performs two procedures — deroofing and I&D. However, he noted that the other surgical methods have resulted in success in the past.
Dr. Lev-Tov said that he performs I&D for people who come to him with an acute nodule or painful bump. However, this technique is typically indicated for short-term pain relief rather than as a permanent solution.
While Dr. Lev-Tov has observed positive outcomes from I&D, he said that he and others have moved to performing mini-unroofing, which is a variation on the I&D procedure.
"We take a punch tool that has a 4 millimeter punch and just make a hole," he said. "If you make an incision smaller than that, it heals within 24 hours, and then the lesion does not resolve. You still get an accumulation of fluid, and you're back to where you started."
The slightly larger hole used in punch I&D allows for continuous drainage, which helps lesions resolve. Dr. Lev-Tov prefers to do this procedure when a person already has scars in the area. However, for a new abscess without any scarring in the area, a classic I&D may be better since the chance of scarring is lower.
Unroofing, also known as deroofing, involves the removal of tissue to uncover tunnels beneath the skin. It is used in cases of moderate to severe hidradenitis suppurativa. HS creates hollow pipes beneath the skin, and unroofing makes them accessible for doctors to treat, Dr. Lev-Tov said.
“The idea of deroofing is to give you the benefit of a surgical procedure, without requiring the entire operation,” he said. “If you think about that hollow pipe ... insert a probe into it and just cut the top of it, and unroof the whole tunnel to remove the skin that's covering the tunnel.”
Most doctors scrape the bottom of the tunnel, then bevel the edges, allowing the skin to heal normally around it, Dr. Lev-Tov said. While he noted that this is not a cure for HS, it can be effective in resolving one tunnel at a time.
Wide surgical excision may be used when larger areas of skin are affected. For example, a person whose entire armpit is afflicted would benefit from this procedure, which involves removing the whole area of affected skin. Dr. Lev-Tov said that advances have made it possible to use laser treatment in some cases.
"There is some data on using a ... carbon dioxide laser to cut around," he said. "That really works like a more effective knife, if you will, to produce good outcomes for a wide excision."
Laser surgery has shown a tendency to prevent the disease from regaining a foothold by showing what appear to be anti-inflammatory properties, he said.
"There's some emerging evidence that you can use a different laser to actually treat the red bumps, the nodules," said Dr. Lev-Tov. "That seems to have an anti-inflammatory effect as well."
Surgery for HS is an emerging field, and there is no consensus within the medical community as to the best method. This is because the condition has so many variables, including which site is affected and how far it has progressed.
There is broad agreement that health care providers intending to perform surgery should do so when HS is in remission, which is when inflammation is at a minimum.
Dr. Lev-Tov said that excision carries risk factors, depending upon how the surgical site is closed. When a large section of skin is excised, the wound is often too wide to close by merely suturing one side to the other, so it is frequently left open to heal. This means having an open wound for an extended period, which Dr. Lev-Tov said can carry a risk of infection and cause longer healing times. After healing, there is a chance of the wound tightening and contracting.
"If you have something in the armpit, you can imagine that a scar that contracts can reduce the range of motion, meaning how high you can reach with your arm," he said.
Another option with wide excision is a skin graft, which involves removing a piece of skin, often from the thigh or buttocks, and applying that skin flap to the wound. While this approach is useful because wound closure is immediate, people considering it should be aware that they will get a scar on the area where the skin graft came from, Dr. Lev-Tov said.
"Until now, you had a disease in your armpit that you could hide," he said. "Once you put a scar on your thigh, this is permanent. It will be there for the rest of your life. Every time you want to wear shorts or a bikini, it will be there."
In some cases, people with HS will elect to use a plastic surgeon, Dr. Lev-Tov said. In situations involving genital areas, he usually recommends seeing a urologist or a specialist in obstetrics and gynecology (OB-GYN). He also advises consulting with a colorectal surgeon in some cases.
Some people with HS might wonder if any medications exist to make surgery for HS a thing of the past. While it's too early to say definitively, the association of inflammation with HS has opened the door to promising medicines, such as Humira (Adalimumab), which treats inflammation pathways.
"Depending on the target that we find, if we can link that target to the inflammation in HS, then having a medication to hit that would work very well," Dr. Lev-Tov said.
Janus kinase (JAK) inhibitors are currently being researched for the treatment of HS. Dr. Lev-Tov is hopeful that the success of this class of medications might pave the way for new U.S. Food and Drug Administration (FDA) approvals. If that happens, more funding could be available for this area of medicine, he said.
"Money will help to support more research, which is what we need," Dr. Lev-Tov noted. "I hope that 10 years from now, if we have this interview, we'll talk about how early we can start therapy and early diagnosis, as opposed to chasing the disease."
Some myHSteam members report positive outcomes after surgery. “The surgery under my underarm went well,” said one member. “Had two removed, and they never came back. I had a plastic surgeon remove one above my brow. It never came back.” Another wrote, “I had the armpit surgery, and it was the best thing for me. Changed my life.”
However, several myHSteam members describe HS' frustrating tenacity and the recurrence of lesions after surgery.
"[The doctor] goes in and removes the infected tissue," said one member. "[He] stitches me back up and I'll have an appointment 10 days or so after to get the stitches removed. But before I can make it to that appointment, I'm breaking out in a new spot.” Another said, "I've had HS for 30 years and had surgeries. I get infected masses, and they all open back up."
By joining myHSteam, the social network and online community for those living with hidradenitis suppurativa, you gain a support group of nearly 18,000 people who understand what it's like to live with HS.
Have you had surgery for your HS? What would you tell those who are considering surgery? Share your tips and experiences in a comment below, or start a conversation by posting on your myHSteam Activities page.