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- The websites of major academic centers still have outdated and incorrect information when it comes to pilonidal disease (…and, yes.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.)
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!