I recently (26/MAY/2022) participated in an interview about living with HS, with my local radio station, Clare FM in Ireland.
The link below contains the brief discussion I had with Alan Morrissey, the host of Morning Focus on Clare FM, about some of the ways in which HS has impacted my life.
In this blog, I will describe the HS landscape in Ireland, focussing primarily on patients, care, and research.
When I was diagnosed with HS by a locum GP in 2006 (after an almost 20-year delay), I did what many others do in such situations i.e., I went online and searched to find out what was available in terms of support(s), care, and research. I was disheartened (putting it mildly) to find out that there was very little happening in any of these areas. All I found was one clinician who had published a few papers on HS. On contacting this clinician’s office, I was told that they no longer had any research interest in HS. And that was it. Thankfully, there have been huge improvements since.
Despite the best intentions of healthcare professionals, family, friends, relevant organisations, and others, only those living with HS (or indeed any other condition[s]) can fully understand what it’s like to have it. Going online in 2006, I was unable to find any patient support groups. However, for over a decade, this private Facebook group offers peer-to-peer support to those living in Ireland directly affected by HS, and also to their families, friends, carers, and others (such as frustrated healthcare professionals keen to learn how to best care for their patients). In this group, we share information, experiences, and knowledge so that we may learn from one another how best to get by with this awful condition. Whilst not for everybody, many members view this network as a lifeline, especially those who have been alone with their HS for long periods. Being able to share experiences can be helpful for many.
HS Ireland, a patient-led association dedicated to supporting those affected by HS and to communicating timely, relevant, and reliable disease information, has recently emerged from the aforementioned Facebook support group. We are also increasingly involved in HS research with clinicians, academics, industry, and others – involving those affected by diseases in research is a win-win situation for all. In addition to Facebook, HS Ireland also operate other social media platforms such as Instagram and Twitter.
We are fortunate in Ireland in that two specialty HS clinics have been established, with knowledgeable and empathetic healthcare staff doing their best for patients, who have by and large fallen through the cracks of healthcare and social systems heretofore. These HS clinics are located at Tallaght University Hospital (led by Professor Anne-Marie Tobin), and also at St. Vincent’s University Hospital in Dublin (led by Professors Rosalind Hughes and Brian Kirby). These clinicians are also active HS researchers (selecting the links on their names will yield Pubmed search results for some of their HS-related work). Laboratory-based academic researchers have also been investigating the molecular mechanisms underpinning HS, such as Professor Jean Fletcher at Trinity College Dublin. Some key HS publications have emerged from Prof. Fletcher’s laboratory, as listed here.
The HS community in Ireland is extremely fortunate to have the support of the good people at the Irish Skin Foundation for numerous years. This is a national charity dedicated to supporting those living with skin conditions in Ireland. The Irish Skin Foundation features an HS section on its website, highlights HS stories from those living with the condition, and has hosted numerous HS awareness, education, and information events over the years. Furthermore, they run a very popular Ask-a-Nurse helpline, a free and confidential guidance service for those with HS (and other skin conditions), operated by empathetic, experienced, and knowledgable dermatology nurses.
As outlined, the HS landscape in Ireland has altered considerably in recent years, for the benefit of all affected by HS. While much has been done, there is much more to do.
Along with another HS patient, I took part in a recent radio interview to discuss HS and the impact it can have on one’s life. The interview was with Anna Geary, host of Supercharged on RTE Radio 1.
This link will take you to the podcast of the show. Fellow HS patient, Dee, and I speak with Anna about our HS from 03:30 to 12:55 minutes in the link. HS dermatologist, Professor Anne-Marie Tobin, also appears on the show. Anna also speaks with a psychotherapist who offers some advice on how to deal with a skin condition. Thanks to Anna and her team for inviting us to discuss this and for highlighting HS to a wide audience.
This event, the 10th Conference of the European Hidradenitis Suppurativa Foundation (EHSF), is happening currently (EHSF2021; 10FEB2021 through 12FEB2021). I was fortunate to attend some of these previous conferences, such as EHSF2020, and it heartening to learn that the event grows from strength to strength, with > 700 delegates registered to attended the 2021 conference (up from > 400 at the 2020 gathering).
I am very happy to learn that patients are being increasingly involved in proceedings, and this year’s event is FREE to register for if you have the condition, albeit with restricted access to proceedings, but some access is better that nought. Discounted rates are also available for nurses, patient representatives, and students. If you wish to register to attend, please click here.
Previously, I have reported on HS-associated pain and highlighted some of the research showing just how much this pain can impact on patients’ lives. The clinical experts recognise the debilitating aspect of pain for many HS patients, and in the nine international HS treatment guidelines published since 2015 (open access reviews here and here), all acknowledge the importance of pain and advocate that treating physicians address this in the course of treatment. Yet to date, little-to-no HS-specific pain recommendations, products, or strategies have been developed. Consequently, patients are (and have been) doing this themselves. A revealing recent study from researchers in Denmark looks at some of the methods used by patients to address their pain.
Astrid-Helene Ravn Jørgensen and colleagues surveyed 134 patients attending a clinic at the Department of Dermatology, Bispebjerg Hospital, Copenhagen, Denmark. Patients were asked to complete a multiple choice seven-item questionnaire on methods they used to self-drain HS lesions, and if so, how they achieved this i.e., by applying pressure using their fingers, needles, or other means (e.g., a knife). Participants were asked to report on how well (or not) these methods worked, and if there were any subsequent symptoms (such as bleeding, infections, malaise). Respondents were also asked to comment on other methods they used for pain relief. Finally, patients were also asked about self-harm.
The researchers found that most (approximately four out of five) of the patients had attempted to relieve the pain themselves by applying pressure. Approximately three out of every four used their fingers to drain their lesions, around one in three had used a needle, while about one in fifteen used a knife. Other pain-relief methods reported by the patients included using painkillers (one in six), showering (one in fifteen), and by applying hot cloths to the affected areas (used by about one in fifty). Not related to pain relief, almost one in nine patients reported self-harm.
Significantly, in their conclusions, the authors remark that self-draining of lesions “may reflect sheer frustration and a pronounced desire to control pain sensation“. The authors of this paper are to be commended for a number of things:
Highlighting this important issue
Attempting to measure the extent of the practice in a patient group
Their non-judgemental appraisal of the situation
At the HS conferences I have been fortunate enough to attend, the HS clinical experts have mentioned self-draining of lesions. They (the experts) suggest that people should not do this. The experts argue, reasonably, that as self-draining of lesions are typically done in non-sterile environments, this may lead to infection and/or other complications (some argue that it may promote sinus tract [tunnel] formation). Furthermore, some argue that the lesions will eventually open naturally and advocate holding out till it passes. This latter point is scant consolation to the person who is rendered physically incapacitated by an angry flaring lesion. Some may have physically demanding jobs, and/or infants/toddlers/young children who may need ‘hands-on’ care and attention, and just about all of those with HS will need to cook, clean, dress/undress, and the multiple other daily chores that require some physical activity. What are the options?
Attend the emergency department of your local hospital where you may well need to wait for long periods? Due to the very poor disease awareness, if one is lucky, the attending physician will be familiar with HS and perform an I&D procedure. (with very high recurrence rates)
Attend your dermatologist? (My last ’emergency’ required a 6-week wait to see my dermatologist – this was before COVID-19)
Go see your family doctor, some of whom will refer to you the local hospital/your dermatologist? Otherwise, the doctor may prescribe oral antibiotics which usually take 24-48 hours before having a desired effect (if at all).
Wait it out?
Deal with it yourself?
The situation reminds me of the old approach to heroin addiction i.e., “just say no”, which doesn’t work. Progressive thinkers began to look beyond this ‘no’ rhetoric and realised that people were going to continue injecting heroin anyway. Some went so far as to propose providing sterile syringes and safe environments where people at least could reduce the risk of picking up infections from previously used and contaminated syringes, and so on.
As reported here, research has shown that sizeable proportions of those with HS are using substances of abuse (such as alcohol, cannabis, opioids) to help relieve the pain. Coupled with this important paper from Ravn Jørgensen and colleagues, is it any wonder?
References:
Ravn Jørgensen, A.H., Yao, Y., Thomsen, S.F., and Christian Ring, H. (2020) ‘Self-Reported Pain Alleviating Methods in Patients with Hidradenitis Suppurativa,’ Actas Dermosifiliogr., OPEN ACCESS, [online], available at: DOI: 10.1016/j.ad.2020.08.011
Few, if any, knows what lays ahead right now. In these uncertain times, guidelines from those who know what they are talking about can guide us along our path. These can shine a light on the road that lay ahead of all of us, may help add a signpost here or there, and pave some of the rocky road that lay ahead. Removing some of the uncertainty is about as much as we can hope or ask for right now.
Many patients are receiving biologics and/or other immunosuppressants, for their HS. Some known side effects of biologics and immunosuppressant side effects include, among others, an increased risk of picking up infections. Many are understandably concerned right now about this increased risk of infection with COVID-19 sweeping around the globe. In light of this, various HS expert groups have been weighing up the risks and benefits of such therapies for treating HS and have issued statements and guidelines for HS patients and those looking after them, as follows:
The European Hidradenitis Suppurativa Foundation have issued a statement for those receiving systemic therapies (drugs or therapies that may affect the body), including biologics and other immunosuppressants, here. Note: these are not binding across all of Europe. Please consult your country’s health service and/or association of dermatologists, or equivalents, for further details.
The Hidradenitis Suppurativa Foundation in the US, have outlined their position here.
The British Association of Dermatologists, have issued the following guidelines for anyone immunosuppressed due to their treatments for HS and/or other skin condition(s).
The Health Service Executive in Ireland have yet to make a formal statement, but I believe one is due soon (I will update accordingly). In the meantime, the Irish Skin Foundation charity (@ISFCharity) recently hosted a Q & A session with some dermatologists, who run HS clinics in Ireland, and you can view this session here.
I am not aware of other statements or guidelines issued as of yet, but will add details as I know more. Alternatively, please contact me if you have any relevant links or details for your country or region.
Time for the HS patient to emerge from the shadows and show some leadership. We can help others right now.
Until a few weeks ago, terms such as “self-isolation” and “social distancing” were unknown to most people, but have now become commonplace around the world. For the typical HS patient, while we may not have heard of such new terms, the concepts and practices of self-isolation and social distancing are all too familiar.
I have been self-isolating and socially distancing for most of my adult life. From my experience of interacting with other HS patients in person and on social media, many report the same. There is a substantial body of evidence research to back up (Esmann and Jemec, 2010; Kouris et al., 2016; Kirby et al., 2017). Many HS patients isolate and distance themselves from others to avoid the stigmatisation, shame, and embarrassment that come with the foul-smelling discharge and staining of clothing that are part and parcel of this condition.
Many people are struggling to adapt to the new reality imposed through lockdowns. Among these will be your family, friends, loved ones, colleagues, and so on. I urge all HS patients with suitable and relevant experience to reach out and assist those close to you and beyond. Show them how to cope with being alone, what you can do to use this time constructively, and how you have managed to adapt. Some useful tips to refresh your memories and point you in the right direction can be found here, here, and here.
As reported recently on Twitter (Palikh 2020):
This virus has a very big ego; he will not come into your house unless you go out and invite him in.
If we do step up and help show the way, we can do our bit to help prevent the horror being witnessed around the globe.
Strange days indeed….
References:
Esmann, S. and Jemec, G.B. (2010) ‘Psychosocial impact of hidradenitis suppurativa: a qualitative study’, Acta Derm Venereol., 91(3), 328–332; OPEN ACCESS[online], available at doi: 10.2340/00015555-1082 [accessed 31 Mar 2020].
Kirby, J.S., Sisic, M., and Tan,. J (2016) ‘Exploring coping strategies for patients with hidradenitis suppurativa’, JAMA Dermatol., 152(10), 1166–1167; OPEN ACCESS, [online], available at doi: 10.1001/jamadermatol.2016.1942 [accessed 31 Mar 2020].
Kouris, A., Platsidaki, E., Christodoulou, C., Efstathiou, V., Dessinioti, C., Tzanetakou, V., Korkoliakou, P., Zisimou, C., Antoniou, C. and Kontochristopoulus, G. (2016) ‘Quality of life and psychosocial implications in patients with hidradenitis suppurativa’, Dermatol., 232(6), 687–691; [online], available at doi: 10.1159/000453355 [accessed 31 Mar 2020].
Palikh, G. (@DoctorPalikh) (2020) ‘Just loved this statement from the AIIMs doctor on NDTV…..”This virus has a very big ego, he will not come into your house unless you go out and invite it in”‘, Mar 22 2020, available: https://twitter.com/search?l=&q=ego%20from%3Adoctorpalikh&src=typd; [accessed 31 Mar 2020].
Suffering has been stronger than all other teaching, and has taught me to understand what your heart used to be. I have been bent and broken, but – I hope – into a better shape.
Charles Dickens, Great Expectations.
I first became aware of this work a couple of years ago and every time I view “Debris”, I take something new from it. I’ll leave it to the artist to explain her motivation behind this piece. The artist, Seraphim, was ~ 15 years old when she created this. She had been diagnosed with HS just ~ 1.5 years prior to composing “Debris”.
Much of the information in this and previous posts examining HS surgical techniques is summarised in the open-access review by Scuderi et al. (2017). Other comprehensive HS surgery reviews include Danby et al. (2015), Zouboulis et al. (2015), and Janse et al. (2016). Having previously examined incision and drainage (used mainly for acute Stage I HS), and the mini-unroofing and deroofing techniques (mainly acute and chronic Stage II) for the surgical management of HS, in this post we will look at the final “cold steel” practice of excision (i.e., cutting out), used mainly for and widely recommended for Stage III HS.
Excision: Overview
An overview of the main HS surgical treatments is given in this WebMD video, with the general excision surgical approach being featured from ~ 0:41 s to 0:57 s.
Excision surgery has been the main method of treating HS in the ~ 200 years since HS was first described in the literature. Indeed, excision was the only effective HS treatment for most of this time. It is only in relatively recent years that effective other treatments have emerged.
In excision, the goals are the complete removal of diseased tissue and the prevention of new HS lesions in future. There are three main excision strategies used: “local”, “wide”, and “radical excision”.
In local excision, each individual lesion and a small amount (a few centimetres) of surrounding healthy tissue (called “margins”) are removed.
In wide excision, the area containing all HS lesions and larger margins are cut out.
In radical wide excision, an entire area of a body region and large margins in which the HS may spread are extracted.
Which method to use is decided on an individual basis, usually when in the operating theatre under bright lights where the surgeon and team can examine the diseased tissue and decide on the extent of margins required. Advances in imaging techniques do and will help surgeons with their preoperative planning (Janse et al. 2016; Lopes et al., 2019).
For severe Stage III HS, wide excision/radical wide excision is recommended in the Brazilian, European, and North American HS guidelines when all other treatment options (i.e., all drugs) have been tried and have failed.
Numerous Wound-Healing Options:
After excision surgery, small to large wounds remain which need to be healed “reconstructed”. The type of wound-healing technique(s) used are often decided by the size and location of the wounds.
Excision followed by primary closure (i.e., closing the wound using stitches), is useful for small wounds. While usually there are quick healing times, good cosmetic and functional results, and fewer complications with primary closure when compared with other techniques (see below), there are reported higher HS recurrence rates (Danby et al., 2015). I have experienced this procedure on many occasions and the scars were not very noticeable even immediately after surgery. However, there have been many recurrences at the sites.
Wide excision followed by secondary intention healing (i.e., letting the wound heal from the “bottom up”), has shown good results in terms of HS recurrence rates, acceptable functional and cosmetic results, and the final scar is typically much reduced when compared to the initial HS lesion(s). The major disadvantages of secondary intention healing are the long healing times (6–12 weeks), and the risk of unsightly scars when very large HS lesions are removed. I have had this procedure done many times and all the scars, while initially very evident, have over time blended nicely into the background and are barely noticeable now, several years after surgery.
Here is an example of excision followed by secondary intention healing in the armpit:
Wide excision with immediate/delayed skin grafting or grafting with negative pressure wound therapy has shown much promise. Grafts (i.e., healthy, unaffected skin) are usually taken from either the thighs or the buttocks of the patient and transplanted to the wound site(s). Grafts allow for the closure of even the largest wounds with minimal risk of serious complications, and ensure acceptable functional and aesthetic results, especially in the armpits and buttocks. However, a significant disadvantage of grafting is that the grafts can fail to take at the surgical site, prolonging the healing times. I have direct experience of this and it can be a very frustrating experience.
An example of HS in the armpit region treated with wide excision followed by skin grafting:
An example of HS in the buttocks (gluteal) region treated with wide excision followed by skin grafting:
Image source
Wide excision with reconstruction using flaps may ensure the best quality of skin, due to thick tissue coverage. In larger wounds, however, flaps are difficult or impossible to use. In comparison with grafts, flap harvesting is more difficult, invasive, and is prone to serious complications like death of the flap tissue and bleeding. Flaps are preferred over grafts in certain body regions, such as the female genitals. However, flap use in HS is complicated by the frequent underestimation of the defect size needed before surgery. Therefore, the proposed flap can be too small.
An example of wide excision of HS in the armpit followed by reconstruction using flaps:
Note that different healing strategies can be employed simultaneously combining the benefits of each. Partial primary closure with secondary intention healing is reportedly effective in certain procedures (Janse et al., 2016). In combination with skin grafting or partial flap reconstructions, secondary headlining intention can also yield good results.
Different excision and reconstruction strategies have been proposed for different body regions, as outlined in this algorithm (algorithm by Kagan et al., 2005; image in Scuderi et al., 2017):
In a recent review based on the authors direct experience of over 100 excisions of HS from the armpits, Ovadja et al. (2019) concluded that for severe armpit HS, reconstruction by primary closure should be reserved for patients with limited HS lesions, whereas using a flap was most effective in avoiding recurrence, but was associated with unfavourable short-term results and patient-reported outcomes regarding function and aesthetics.
Note also that all the aforementioned techniques run risks associated with most surgeries, such as post-operative bleeding, wound infection, and pain. I know only too well about these having experienced all at some stage(s). Perhaps the most frustrating risk from a patient perspective, however, is that of HS recurrence at the surgical site. It can be absoloutely devastating to experience recurrence having gone through so much with the initial surgery .
Excision Surgery: An In-Depth Look
This ~ 8 min YouTube video, an extract from the UK’s excellent Channel 4 series Embarrassing Bodies from a few years ago (the show has featured HS on several occasions helping to raise HS awareness and reduce diagnostic delays), gives an overview of the wide excision process. It also gives the viewer a good appreciation for what the late great author Philip Roth eloquently described as “the concrete violence of surgery“.
In the video we meet David, a young man with severe Stage III HS in the armpit, before the surgery highlighting how profoundly HS was impacting his life, physically by restricting arm movement impacting everyday things like cooking, cleaning, and getting dressed etc. It also gives a good insight into what is involved in the actual surgery and finishes with how the surgery, which was successful, has had a positive influence on David’s quality of life:
I appreciate the producers tried to fit in as much relevant information as possible in a time-restricted slot, but I must stress that they omitted a very important feature of surgery relevant to anyone contemplating getting their HS excised, and that is the often-extensive healing times required. I have had similar procedures to David (on my armpits, buttocks, and groin) and when everything goes well, healing, involving dressings changes every 23 days by a wound care nurse, takes 6–8 weeks. However, surgery and aftercare can be a physically gruelling and brutal process. On a few occasions, I have developed wound infections which extended the healing times from the usual 6–8 weeks to 6+ months in some cases, which was deeply frustrating and mentally challenging. Each trip to the wound care nurse involved taking time off work/university etc., and what was initially an inconvenience soon turned into an ordeal.
Wound dehiscence (where the surgical wound opens up partially or completely after surgery) can also be a significant issue after excision surgery. I have experienced this and found it to be very distressing, but after some interventions by the surgeons and a lot of help from the patient nurses, we were able to get over it.
The graft donor site can be physically painful and extremely itchy after surgery, but with each passing day these fade. I am ~ 12 years after my first skin graft procedure and the donor site scar, which was initially raw red right after surgery, then faded to pink, and over time has paled into insignificance, so much so that I cannot identify the donor sites anymore. Similarly for the surgical scars, these too have dimmed over time and today I am very happy with how they look.
Skin-Tissue–Saving Excision with Electrosurgical Peeling (STEEP):
Although not yet recommended by the various national/international HS treatment guidelines, a newly described excision approach, STEEP (Blok et al., 2015), is emerging as an attractive alternative to wide excision procedures.
In STEEP, schematically illustrated and compared to wide excision approaches below, a probe is used to locate diseased tissue, which is then peeled off layer-by-layer. The net result is that, compared to wide excision, less unaffected tissue is removed. The wounds are then left to heal by secondary intention healing. Janse et al. (2016) report a high patient satisfaction rate with STEEP. Furthermore, postoperative bleeding, infections, and pain are lower than excision techniques. However, recurrence rates are slightly higher than wide excision techniques (Saunte and Jemec, 2017) and Janse et al. (2016) note that nerve irritation has been reported in ~ 1% of patients .
Long-term follow-up studies are required to assess if STEEP is a viable alternative to excision techniques.
Conclusions:
The development of an array of effective pharmacological treatments in recent years has facilitated HS management; however, surgical excision techniques are widely used and recommended for severe HS that has proven difficult to control with other methods. New excision procedures and refinements to existing techniques are being developed all the time. Surgical excision techniques still offer the best prospects of long-lasting effective HS treatment.
References:
Blok, J.L., Spoo, J.R., Leeman, F.W., Jonkman, M.F. and Horváth, B. (2015) ‘Skin-tissue sparing excision with electrosurgical peeling (STEEP): a surgical treatment option for severe hidradenitis suppurativa Hurley stage II/III,’ J Eur Acad Dermatol Venereol., 2015, 29(2), 379–382, [online], available at: doi: 10.1111/jdv.12376, [accessed 11 Aug 2019].
Danby, F.W., Hazen, P.G. and Boer, J. (2015) ‘New and traditional surgical approaches to hidradenitis suppurativa,’ J Am Acad Dermatol., 73(5 Suppl 1), S62–65, [online], available at: doi: 10.1016/j.jaad.2015.07.043, [accessed 11 Aug 2019].
Ferris, A. and Harding, K. (2019) ‘Hidradenitis suppurativa: a clinical summary’, Wounds UK, 1, 53–57, available here, [accessed 11 Aug 2019].
Janse, I., Bieniek, A., Horváth, B. and Matusiak, Ł. (2016), ‘Surgical procedures in hidradenitis suppurativa,’ Dermatol Clin., 34(1), 97–109, [online], available at: doi: 10.1016/j.det.2015.08.007, [accessed 11 Aug 2019].
Kagan, R.J., Yakuboff, K.P., Warner, P. and Warden, G.D. (2005) ‘Surgical treatment of hidradenitis suppurativa: a 10-year experience,’ Surgery, 138, 734–741.
Kohorst, J.J., Baum, C.L., Otley, C.C., Roenigk, R.K., Schenck, L.A., Pemberton, J.H., Dozois, E.J., Tran, N.V., Senchenkov, A., and Davis, M.D. (2016) ‘Surgical management of hidradenitis suppurativa: outcomes of 590 consecutive patients,’ Dermatol Surg., 42(9), 1030–1040, [online], available at: doi: 10.1097/DSS.0000000000000806, [accessed 11 Aug 2019].
Lopes, A.A., Moraes, G.N., De Lima Dias, B.M.M., De Souza, G.D. and De Souza, L.Q. (2019) ‘Preoperative imaging assessment of hidradenitis suppurativa’, Rev Bras Cir Plást., 3(2), 264–267, [online], available at: doi: 10.5935/2177-1235.2019RBCP0143, [accessed 11 Aug 2019].
Maeda, T., Kimura, C., Murao, N. and Takahashi, K. (2015) ‘Promising long-term outcomes of the reused skin-graft technique for chronic gluteal hidradenitis suppurativa,’ J Plast Reconstr Aesthet Surg., 68(9), 1268–1275, [online], available at: doi: 10.1016/j.bjps.2015.05.025, [accessed 11 Aug 2019].
Mendes, R.R.D.S., Zatz, R.F., Modolin. M.L.A., Busnardo, F.F. and Gemperli, R. (2018) ‘Radical resection and local coverage of hidradenitis suppurativa – acne inversa: analysis of results,’ Rev Col Bras Cir., 45(3), e1919, [online], available at: doi: 10.1590/0100-6991e-20181719, [accessed 11 Aug 2019].
Ortiz, C.L., Castillo, V.L., Pilarte, F.S. and Barraguer, E.L. (2010) ‘Experience using the thoracodorsal artery perforator flap in axillary hidradenitis suppurativa cases,’ Aesthetic Plast Surg., 34(6), 785–792, [online], available at: doi: 10.1007/s00266-010-9544-4, [accessed 11 Aug 2019].
Ovadja, Z., Bartelink, S.A.W., van de Kar, A., van der Horst, C., and Lapid, O. (2019) ‘A mulitcenter comparison of reconstruction strategies after wide excision for severe axillary hidradenitis suppurativa,’ Plast and Reconstruct Surg – Global Open, [online], available at doi: 10.1097/GOX.0000000000002361, [accessed 11 Aug 2019].
Rompel, R. and Petres, J. (2000) ‘Long-term results of wide surgical excision in 106 patients with hidradenitis suppurativa,’ Dermatol Surg., 26(7), 638–643, [online], available here.Saunte, D.M.L. and Jemec, G.B.E. (2017) ‘Hidradenitis suppurativa – advances in diagnosis and treatment,’ JAMA, 318(20), 2019–2032, [online], available at: doi: 10.1001/jama.2017.16691, [accessed 11 Aug 2019].
Scuderi, N, Monfrecola, A., Dessy, L.A., Fabbrocini, G., Megna, M.and Monfrecola, G. (2017) ‘Medical and surgical treatment of hidradenitis suppurativa: a review’, Skin Appendage Disord., 3(2), 95–110, [online], available at: doi: 10.1159/000462979, [accessed 11 Aug 2019].
Zouboulis, C.C., Desai, N., Emtestam, L., Hunger, R.E., Ioannides, D., Juhász, I., Lapins, J., Matusiak Ł, Prens, E.P., Revuz, J., Schneider-Burrus, S., Szepietowski, J.C., van der Zee H,H. and Jemec, G.B. (2015) ‘European S1 guideline for the treatment of hidradenitis suppurativa/acne inversa’, J Eur Acad Dermatol Venereol., 29(4), 619–644, [online], available at: doi: 10.1111/jdv.12966, [accessed 27 Jul 2019].
We previously introduced some of the common techniques used for the surgical treatment of HS, summarised in this excellent short (~ 1 min) informational video from WebMD. Much of the information in these posts examining HS surgical techniques is summarised in the open-access review by Scuderi et al. (2017). Other comprehensive HS surgery reviews include Danby et al. (2015) and Janse et al. (2016).
Mini-Unroofing and Deroofing: An Overview
First described over half a century ago (in 1959), one surgical strategy that has grown enormously in popularity in more recent years for treating HS is deroofing (also referred to as unroofing in the literature). Although there are some variations of the technique, (outlined below), the basic principal of each is more or less the same, illustrated here:
In deroofing, the top or “roof” of the HS lesion is surgically removed (partially in mini-unroofing or completely in deroofing) and the wound is left to heal from the bottom up (known as secondary intention healing). We will now look at the main deroofing techniques in more detail.
Punch Debridement/Mini-Unroofing:
In a previous post, we examined the popular surgical technique known as incision and drainage (I & D), a well-established strategy that is very effective at relieving pain in acute HS flares and well-suited to stage I HS in the Hurley classification system. Another strategy growing in popularity for the treatment of acute flares in stage I HS is mini-unroofing or punch debridement, illustrated in the WebMD HS surgery video from ~ 29 to 41 seconds.
In punch debridement/mini-unroofing, after applying local anaesthetic to the affected area, a tool known as a punch biopsy is used to extract the top 5–8 mm of skin of the HS lesion, and the wound is then left to heal. Here is a ‘before and after’ series of images of the area under a female breast affected by HS that has had punch debridement:
Punch debridement is well suited for acute stage I HS. It is relatively inexpensive, can be performed in just a few minutes in an office, surgery, or hospital accident and emergency department setting. In addition, it preserves the maximum amount of surrounding healthy tissue, and doctors and patients report the resulting surgical scars are generally cosmetically acceptable.
However, like I & D, mini-unroofing is not effective in treating chronic HS. In such instances, other surgical approaches are needed, and deroofing is one such technique.
Deroofing:
Like mini-unroofing, deroofing is a relatively inexpensive and fast procedure that is well suited to the office or surgery setting. In addition, deroofing also preserves the maximum amount of surrounding healthy tissue and the scars are usually acceptable to the patient. In this technique, usually performed by a dermatologist, a local anaesthetic is applied to the affected area(s) and the dermatologist uses a scissors, scalpel, electrosurgery, or a CO2 laser to remove the roof of the lesion. It can be used on a single lesion (local deroofing), or it may be used on all lesions in an affected body area (extensive deroofing).
The videos on this page illustrate the HS deroofing procedure, highlighting just how quick it can be:
Over the past decade or so, deroofing has been widely used to successfully treat stage I–II HS. Several long-term follow-up studies report that recurrence rates in deroofing are much improved over I & D procedures (which approach 100%) and comparable (from ~ 4% to < 30%) to more invasive excision surgery (reviewed in Janse et al., 2016 and in Kohorst et al., 2016; Scuderi et al., 2017). The only reported complication with deroofing reported so far is bleeding after surgery in a small number of cases (~ 1%). Janse et al. (2016) report a high satisfaction rate among HS patients, with ~90% reporting that they would recommend deroofing to other patients.
Expert opinion in the European (Zouboulis et al., 2015), North American (Alikhan et al., 2019), and Brazilian (Magalhães et al., 2019) guidelines for the treatment and management of HS all recommend deroofing (European: for stage I and II areas; North American: for acute and chronic wounds; Brazilian: in acute phases). In contrast, I & D is recommended in the North American and Brazilian guidelines only for acute HS abscesses to relieve pain, and not recommended at all in the European guidelines.
Despite the many advantages the technique offers, deroofing is limited in that it is usually effective only in stage I–II HS. More advanced HS (stage III) usually requires more complex surgery (excision).
Conclusions:
Due to the relatively low cost, rapid procedure times, minimum inconvenience for the patient, and overall effectiveness, the mini-unroofing and deroofing surgical techniques have been widely used in recent years for the treatment and management of HS. Many HS experts in the Americas and Europe are using these procedures in their clinics and are reporting promising results in the long-term management of HS. Patient-reported satisfaction with the procedures and outcomes are very high.
References:
Alikhan, A., Sayed, C., Alavi, A., Alhusayen, R., Brassard, A., Burkhart, C., Crowell, K., Eisen, D.B., Gottlieb, A.B., Hamzavi, I., Hazen, P.G., Jaleel, T., Kimball, A.B., Kirby, J., Lowes, M.A., Micheletti, R., Miller, A., Naik, H.B., Orgill, D. and Poulin, Y. (2019) ‘North American clinical management guidelines for hidradenitis suppurativa: A publication from the United States and Canadian Hidradenitis Suppurativa Foundations: Part I: Diagnosis, evaluation, and the use of complementary and procedural management,’ J. Am. Acad. Dermatol., 81(1), 76–90, [online], available at: doi: 10.1016/j.jaad.2019.02.067, [accessed 27 Jul 2019].
Danby, F.W., Hazen, P.G. and Boer, J. (2015) ‘New and traditional surgical approaches to hidradenitis suppurativa,’ J. Am. Acad. Dermatol., 73(5 Suppl 1), S62–65, [online], available at: doi: 10.1016/j.jaad.2015.07.043, [accessed 27 Jul 2019].
Janse, I., Bieniek, A., Horváth, B., Matusiak, Ł. (2016) ‘Surgical procedures in hidradenitis suppurativa,’ Dermatol. Clin., 34(1), 97–109, [online], available at: doi: 10.1016/j.det.2015.08.007, [accessed 27 Jul 2019].
Kohorst, J.J., Baum, C.L., Otley, C.C., Roenigk, R.K., Schenck, L.A., Pemberton, J.H., Dozois, E.J., Tran, N.V., Senchenkov, A. and Davis, M.D. (2016) ‘Surgical management of hidradenitis suppurativa: outcomes of 590 consecutive patients,’ Dermatol. Surg., 42(9), 1030–1040 [online], available at: doi: 10.1097/DSS.0000000000000806, [accessed 27 Jul 2019].
Magalhães, R.F., Rivitti-Machado, M.C., Duarte, G.V., Suoto, R., Nunes, D.H., Chaves, M.H., Hirata, S.H. and Ramos, A.M.C. (2019) ‘Consensus on the treatment of hidradenitis suppurativa – Brazilian Society of Dermatology’, An. Bras. Dermatol., 94, (2 Suppl 1):7–19, [online], available at: doi: 10.1590/abd1806-4841.20198607, [accessed 27 Jul 2019].
Scuderi, N, Monfrecola, A., Dessy, L.A., Fabbrocini, G., Megna, M.and Monfrecola, G. (2017) ‘Medical and surgical treatment of hidradenitis suppurativa: a review’, Skin Appendage Disord., 3(2), 95–110, [online], available at: doi: 10.1159/000462979, [accessed 27 Jul 2019].
Zouboulis, C.C., Desai, N., Emtestam, L., Hunger, R.E., Ioannides, D., Juhász, I., Lapins, J., Matusiak Ł, Prens, E.P., Revuz, J., Schneider-Burrus, S., Szepietowski, J.C., van der Zee H,H. and Jemec, G.B. (2015) ‘European S1 guideline for the treatment of hidradenitis suppurativa/acne inversa,’ J. Eur. Acad. Dermatol. Venereol., 29(4), 619–644, [online], available at: doi: 10.1111/jdv.12966, [accessed 27 Jul 2019].