Vol 87: To never walk alone
Brenda slowly got out of bed. Her clothes were soaked in sweat; her legs shook uncontrollably. And with her lower back pulsating, like hammers beating on a goatskin drum, she stumbled to the kitchen to get the next glass of water so she could swallow the anti-inflammatory by her bedside. It would be the sixth attempt in less than 24 hours to reduce the inflammation that was now dominating her life.
She’d been dealing with this condition on and off for years, but never like this. It felt as if a demon were trying to cut its way out of her back using a butter knife. The most debilitating time of day was now when she was trying to sleep. Lying awake in agony and counting seconds to the sun’s birth, gravity placed volcanic pressure on the palpable lesion near her lower back. No sleep position was bereft of pain. So, she continually but guardedly switched from one side to the next with no relief in sight, as she painfully wept in silence.
In her early twenties, my patient Brenda (an alias) developed a painful mass on the inside of her cheek after having her wisdom tooth removed. This tooth (the third molar at the back of her jaw) had become impacted over a period of time and was now infected. Her oral surgeon anesthetized the area and made a small incision into the gum. Despite copiously deadening the region, it felt like the needle was piercing her jaw. The pain became so intense and violent that Brenda had to physically lock her hands onto the white dental chair to stop herself from screaming, jumping and fleeing the exam room.
Fortunately, relief was immediate and other than some mild pressure experienced as the tooth was being extracted, she felt okay. Once finished, the incision site was coapted using dissolvable stitches and Brenda prayed, hopeful that the worst of her problems were behind her.
But, within a week of her procedure, a purulent-filled mass emerged near the extraction site. It doubled in size within 24 hours and tripled in less than one and a half days since she first noticed it. The pain was worse than before her wisdom tooth was removed. Brenda returned to her surgeon, afraid that she’d done something wrong to cause her current predicament. He reassured her that this was common and lanced the area with a surgical blade. The ball of purulence that had formed inside was drained then flushed with water before packing the area. She was started on an antiseptic mouthwash and oral antibiotics but before it could fully heal, a new mass emerged.
Over the course of several months Brenda saw four different doctors, each more disappointing than the last, until she was referred to a plastic surgeon. Under general anesthesia, he performed a surgical incision and drainage within an operating theater at a public hospital. She recovered without incident and never had the mass in her cheek again. She and her husband paid for the procedure out-of-pocket but the expense was worth it to finally be pain free.
A decade later, however, after the birth of her daughter, Brenda noticed a similar mass underneath her right armpit. It looked similar to her previous abscess but this time, it was larger than the one in her mouth and even more painful. Without insurance, she couldn’t afford to return to the plastic surgeon so she went to a general physician who tried lancing the area and packing it but with little success. Brenda went to a more experienced general practitioner after that but the results were the same. Refusing to wait months for any notable relief, she and her husband used the last of their savings to return to the plastic surgeon who’d helped her in the past.
Brenda felt relieved when the mass finally healed under his care but her relief was short-lived when within the year, a new mass emerged. This time, it was between her breast and then another below her left arm. With no expendable funds to have it treated privately each time, Brenda had them treated at a public clinic so routinely that the staff knew her by name. After having it lanced and packed, it would resolve quickly with a strong five-day antibiotic regimen. But that antibiotic was expensive so she’d often opt to have a generic version prescribed instead. That antibiotic was unfortunately noticeably less effective and she’d have to be on it for over a month causing diarrhea and stomach aches.
As soon as the funds became available, Brenda made an appointment to see her plastic surgeon and for the first time she was given a diagnosis for her condition. She was suffering with Hidradentis suppurativa and it was likely stemming from a hormonal imbalance that she developed after giving birth. She was advised to discontinue taking birth control pills. She also had to stop shaving, wearing wired bras and using deodorant and she had to start taking a low dose of antibiotics periodically to prevent flare ups. He also discussed the benefits and risks associated with undergoing corrective surgery but he stressed that the procedure was inherently difficult and fraught with complications so Brenda and her husband opted against it.
Hidradenitis suppurativa is a chronic and painful skin condition that often occurs near the groin, armpits, breasts and buttocks in 1 out of 100 people, mostly women. The etiology is unknown but it has been linked to smoking, obesity and Crohn’s disease. Brenda had none of those risk factors and her health in general was great with no past medical or surgical history, no history of allergies or alcohol consumption. The condition forms when hair follicles become blocked and it is not associated with poor hygiene. It is a lifelong and recurring medical condition for which there is no cure.
To better manage her symptoms, Brenda has used antiseptic soaps and various types of deodorants with varying levels of success and for the most part has learned to live with her condition. But then there are times, like recently when her flare-up was so crippling, she has been left begging for something to change.
In its most recent manifestation, where our story started, Brenda had an abscess form on her lower back near her tailbone and it eventually grew to the size of a golf ball. Barely able to walk without eliciting intense, paralyzing pain, Brenda struggled to sit, drive or lay down and was in constant pain. She endured the pain for one week and saved enough money to purchase the strong five-day antibiotic that usually helped. To her eternal dismay, it was out of stock across the island so she remained on the generic antibiotic until she began to vomit uncontrollably.
Afraid that the infection was spreading throughout her daughter’s body, Brenda’s mother took action. A strong believer in the healing power of bush medicine, she applied a special leaf heated over a flame with butter. By morning, the abscess had erupted and her pain began to dissipate solidifying an age-old certainty – no matter the age, life is infinitely better, even sometimes easier, when a loving parent is nearby to guide you.
When asked what her take home message for readers is, Brenda answered that despite her decades-long struggle with this painful and rare condition, she finds it hard to ask for help. By nature, she has a mother’s self-less spirit and loves helping others but rarely accepts help for herself. Yet, she encourages others to seek treatment early because she realizes that it yields better outcomes.
Brenda also emphasized that on the days she struggled to lift her arms, her legs felt stronger. When she struggled to sit, her feet carried her forward and through it all, she’s never had to walk alone because God and her family, her church community and friends have always been at her side. For that she’s grateful and hopes others can find the strength to persevere whatever trials they’ve been tasked to endure.
There’s a line in the children’s classic ‘Adventures of Winnie the Pooh’ written by A.A. Milne where Pooh asked Piglet what day it was, only to be told that it was ‘today’. Pooh then responded in glee that today was ‘his favorite day’. Even as a child that exchange always resonated with me but I’ve only really begun to appreciate the value of embracing every day as an adult and more specifically as a physician.
Despite dealing with pain or painful conditions daily and integrating science and experience into every case, the reality is that we can never feel exactly what the patient feels. We’re on the outside looking in and at times it’s heart-wrenching. We will never know what someone is going through just by looking at them and many people like Brenda suffer in silence for longer than necessary. Those who make it through to the other side of their pain often have a community to help carry them when they can’t walk on their own any longer. May we all pray for others who may not be so lucky.
This is The KDK Report
