When discussing pilonidal disease, most conversations focus on the physical aspects: pain, drainage, wounds, surgery, and healing. But there is another side of pilonidal disease that receives much less attention: the emotional toll that can result from repeated failed treatments.
Many of the patients who come to our clinic have already undergone one, two, three, or even more unsuccessful procedures. Some have spent months or years dealing with open wounds, daily dressing changes, wound vacs, missed school, missed sports, missed work, and repeated disappointments.
By the time they arrive here, the problem is often much more than a wound that won’t heal.
Learning to Expect Failure
One of the most common things I observe is that patients begin to expect bad news. After enough unsuccessful operations, many become convinced that every treatment will eventually fail.
I remember speaking with a patient in the recovery room after her cleft lift procedure. She had undergone several failed operations elsewhere. I told her that the surgery had gone well and that I expected her to do fine. She looked up at me and said:
“Yeah, that’s what they told me after the other operations.”
Her response wasn’t hostility or distrust. It was the natural consequence of repeated disappointments. She had heard optimistic predictions before, only to watch the problem return.
One mother described her feelings while waiting during her son’s cleft lift procedure:
“I spent the entire two hours in the waiting room stressed out thinking that my son’s case would be the one that didn’t work—we were so used to getting just bad news.”
Another patient wrote:
“I was a lost hope until I found Dr. Immerman.”
After enough failures, many patients stop expecting success.
The Recovery May Be Successful, But the Anxiety Remains
Even after a successful operation, many patients remain on high alert. I often tell parents that it may take three months or more before their son or daughter truly accepts that the problem is solved. This is especially true when previous failures occurred at specific times during recovery. If a prior operation failed at three weeks, patients become nervous when the three-week mark approaches. If another procedure failed at six weeks, they often become anxious again at six weeks. They have learned to expect disappointment.
One patient described it this way:
“I’m feeling back to myself even though I’m still paranoid with every new sensation or twinge as the nerves repair themselves.”
Another wrote:
“Even during the healing process, since I was so paranoid from previous experiences, I was constantly emailing Dr. Immerman questions.”
These patients are not being unreasonable. They are responding to experiences that taught them to expect another setback.
Some patients wonder if what they are experiencing is a form of post-traumatic stress. Although most patients with failed pilonidal surgery do not have a formal diagnosis of PTSD, many describe symptoms such as anxiety, hypervigilance, fear of recurrence, and difficulty believing the problem is finally resolved.
Fortunately, as the weeks and months pass, that anxiety gradually fades.
Rebuilding Trust
Repeated failures can also damage a patient’s confidence in medical care.
One mother wrote:
“We had faith and trust in our doctor; however, it was diminishing.”
One thing I have learned over the years is that many patients arrive expecting to hear more bad news.
Patients often travel hundreds or even thousands of miles to see us. By the time they arrive, they have frequently undergone multiple procedures, endured years of drainage or open wounds, and been told that their situation is unusually difficult. When I examine them for the first time, I often sense that they are waiting for me to say that I can not fix their problem.
In reality, most of these cases are not unusual for a practice devoted exclusively to pilonidal disease. What feels overwhelming to the patient often represents a routine case for an experienced cleft lift surgeon. Once I explain this, for the first time in years, they feel that someone understands the problem and has a plan.
My advice to patients as they navigate the healthcare system is not to abandon trust , but rather “trust but verify.” Ask questions. Understand the rationale behind recommendations. Seek additional opinions when appropriate. Become an informed participant in your care.
The Final Stage of Emotional Healing
One of the most gratifying things we hear from patients is not simply that their incision healed.
It is that they stop thinking about pilonidal disease altogether. One parent reported:
“He recently told me that he had not thought about pilonidal at all over the last 8 weeks.”
Patients who have spent years worrying about drainage, wound care, recurrence, and additional surgeries gradually reach a point where they stop examining the area, stop anticipating problems, and stop planning their lives around pilonidal disease. Our recent survey of 1,000 cleft lift patients helps put this into perspective:
- 98.6% were satisfied or extremely satisfied with their cleft lift surgery.
- 87.4% described their recovery as very easy, easy, or better than expected.
- Among patients who had previous operations, 76.4% wished they had chosen the cleft lift as their first procedure.
The written comments were even more revealing than the numbers.
Patients repeatedly used phrases such as:
“Life-changing.”
“Gave me my life back.”
“I can sit again without pain.”
“No more drainage or open wounds.”
The emotional burden of pilonidal disease can be substantial, especially after repeated failed treatments. Fortunately, when the disease is finally resolved, those emotional wounds often heal as well.
For many patients, the final stage of recovery is not when the incision closes. It is when they realize they no longer spend their days wondering if the disease is coming back.
