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How should a patient determine their best options for treatment of pilonidal disease?

Why are patient experiences so different? How do I get good information?

Information from discussion with a local surgeon

In general, having an appointment with a local general or colorectal surgeon would seem to be the best approach – and I recommend that you consider that – but unfortunately it does not always work out as it should and it may not be as helpful as it could be:

  • Many surgeons are not familiar with all the options for treating pilonidal disease, and have misinformation regarding the complication rates, recurrence rates, and recovery period involved with the various procedures. They often have one operation that they have been doing since residency, and have not revisited whether or not it is really the best option for patients.
  • Surgeons often minimize the disruption in lifestyle during the recovery period of these procedures, and often grossly underestimate the amount of time needed for these wounds to heal.
  • When physicians discuss this, they often use incorrect terminology. Even something as simple as “open excision” can encompass many different operations, ranging from a small, ½” wound – to a wound as big around as a grapefruit! Clearly, the recovery from one is going to be different than another. What one surgeon may call a ”cleft lift”, another might call an “excision with midline closure”.
  • Surgeons do things differently, have different degrees of interest in pilonidal disease, and have varying results. So, just because a surgeon says he is going to do one thing, does not mean it is the same as another surgeon saying the same thing.
  • The websites of major academic centers still have outdated and incorrect information when it comes to pilonidal disease (…and, yes. They have been contacted, and they persist in their online misinformation.)
  • Most surgeons do not have accurate data on their own success rates. When their procedure fails, the patients often go elsewhere for treatment, and the original surgeon makes the incorrect assumption that things ultimately healed.
  • So, going to see a surgeon is a good idea, but afterwards, it is a good idea to do some research. As Ronal Reagan said, “Trust…but verify.”

Information from online discussion boards

It is not unusual for online discussions to start with a patient asking for the experiences of others in order to help him or her decide what might be the best kind of treatment for their own pilonidal problem. These discussions usually elicit numerous responses from helpful posters describing the experience that they have had, or a friend, or family member has experienced

The original poster often finds that these answers either provide solace or anxiety regarding their particular situation. Although everyone involved means well – this isn’t the best way to get information.

Reasons why the advice may not be helpful:

  • Every patient has a different situation. The appropriate options available to someone with just a few asymptomatic pits is quite different from a patient with an open perianal wound after previous failed operations.
  • Your degree of disease may be very different than that of the person answering your question, and your baseline anatomy and ability to heal may be very different as well.
  • Patients’ tolerance for pain, disruption in lifestyle, and failure are quite different. For some patients the idea that a second operation might be needed is intolerable; for others a lifelong daily regime of hygiene, topical medications, and lifestyle modification is felt to be acceptable. So, when one poster says that recovery from an operation was “easy” and another “a nightmare”; that might be helpful, but has to be viewed as purely subjective.
  • People have different ideas of how proactive to be about this problem. This web page discusses how to think about pilonidal disease with minimal symptoms.
  • These posters are usually not physicians, and may or may not have the basic knowledge needed to answer your question, and the information that they have received from their surgeons may actually be incorrect (see above).

Information from literature research

As I said above, it is reasonable start with the opinion of a local surgeon, but then do some research to see if they have discussed all the options, and if what they said made sense. You can also call or email one of the pilonidal specialists in your country. The websites of the Pilonidal Alliance and the International Pilonidal Society may be helpful. This is one situation where another opinion is a good idea.

However, even doing your own research is fraught with problems because there are articles extolling the virtues of just about any pilonidal procedure that you can imagine. Fortunately, one of the most useful articles came out in 2018 authored by Stauffer, Luedi, et. al. and published in Scientific Reports and is available to everyone online. They compiled the results of 6,143 studies encompassing 89,583 patients, and describe the recurrence rates of various procedures over time. So far, this is the best we have to compare results of the various operations. If you look at this article and don’t want to read through the minutiae, just take a look at Figure 3 which shows recurrence rates of various operations at 12,24, 60, 120 and 240 months.

What about the cleft lift?

You may have noticed that I have not mentioned the cleft lift procedure in this blog post until now. My personal opinion is that it is the procedure that has the lowest recurrence rate with the easiest recovery if done by a surgeon who has experience in performing the operation, and is appropriate for all presentations of pilonidal disease. In the article mentioned above it has a recurrence rate of 0.2% at 12 months and increases to 2.7% at 120 months. This compares very favorably to the other procedures. In 2021 I published an article consisting of 700 patients who had the cleft lift procedure in our clinic. The recurrence rates varied depending on the severity of the initial presentation and was as low as 1.9% in patients without previous surgery, with an overall success rate of 96.6% (I now have over 1000 patients in this series, and the numbers have not changed.)

Conclusion

It is actually a sad state of affairs when patients have to go through all of this analysis to determine their best treatment. In a perfect world, they should be able to go into any surgeon’s office and get a good discussion of the best options for them. For most diseases treated by board certified general, colorectal, and plastic surgeons that is certainly the case. But, for pilonidal disease it is not, and it does not appear that this is going to change in the near future – so you have to advocate for yourself!

Dr. Immerman

Over 10,000 Article Views

The research is making a difference

Dr. Immerman published the article “The Bascom Cleft Lift for All Presentations of Pilonidal Disease” in February of 2021.

Since then, it has had over 10,000 views from 133 different countries. Clearly, this research is of interest to doctors and patients all over the world, and the concept of online publishing is an important way to spread information. Of the over 10,000 articles on the Cureus platform, this article is 217th in the number of reads.

Over 10,000 views from 133 different countries in one year. (PMC indicates views on PubMed.)

You can read the article yourself by following this link: “The Bascom Cleft Lift for All Presentations of Pilonidal Disease”

The article has been viewed by individuals in 133 different countries. Here are the top ones.

Although there are many published papers describing the benefits of the cleft lift operation, Dr. Immerman feels it is important that more papers are published to convince the surgeons of the world to learn this procedure.

Why might a cleft lift need to be revised?

There are times when even a properly performed cleft lift will need another operation to adjust the shape of the cleft. The reasons for this fall into two categories: 

  1. The original incision has failed to heal properly or has healed, but come apart later.
  2. A new fold has developed and now there is recurrent pilonidal disease in that fold.

Failure to heal properly

Although every attempt is made to reshape the gluteal cleft such that:

1. the incision is not in the midline

2. the cleft is flattened

3. the new configuration remains optimal in all positions (such as sitting, standing, lying down, etc)

This can be a difficult thing to accomplish. There are times when achieving this is a problem during the procedure itself because of previous surgery, intense scarring, or just the individual patient’s shape. Other times, the incision drifts toward the midline in the days or weeks after surgery. This is especially a problem if there is infection, wound separation, or severe reactions from autoimmune disease in the post-operative period; this can change the position of the scar and cause it to move toward the midline. 

When this occurs, it is reasonable to try to reshape the bottom of the cleft again, which we call a “revision”. This is usually successful. This is a more likely reason to need a revision in patients who have had other previous operations and wounds very close to the anus at the start. 

Recurrent pilonidal disease

In our clinic this is the most common reason for a cleft lift to need revision. This is not ever predictable. It is very difficult to flatten the cleft all the way to the anus in some patients just because of how their body is shaped. Most people do have some sort of midline fold above the anus in some positions, which flattens out in other positions. It is unclear why a fold that might not be a source for recurrent pilonidal disease might be a problem in one patient, and not another. 

The only external factor that we have observed that might play a role in this is wearing clothing that is tight across the hips, that might be compressing the buttocks together. 

 

Below is an example of a situation where a new fold developed and a new sinus developed. 

pilonidal
This patient presented with a sinus. In the original operation the cleft was nicely flattened, and seemed to have an optimal configuration.
pilonidal
Nine months later, this patient presented with a new sinus. As you can see, the small fold near the anus developed a primary sinus tract opening. This revision flattened the lower fold, and has solved the problem.

In the example above, the recurrent problem was not predictable, but was something that could be repaired by extending the cleft lift even farther down. As with most operation, sucess requires a delicate balance between too much and too little. 

Conclusion

In general, there are no operations that are successful and complication free in 100% of patients. The cleft lift is the operation that has the highest success rate for treating pilonidal disease, but there are times when it fails and need revision. One of the aspects of the cleft lift that sets it apart from other flap procedures is that failures can be repaired by using the same principles as the first operation, but entending the procedure lower. These revisions, at least in our clinic, are almost always successful.