ACNES · treatment

There is a clear route. As long as you are offered it.

The good news about ACNES: once the diagnosis is there, a proven step-by-step plan is ready, from a simple injection to surgery. It often works. The trap is not the absence of treatment, but the years you lose before anyone takes this path.

Important: this page explains which treatments exist, based on the national guideline in the Netherlands. It is not treatment advice. What is appropriate in your situation is decided together with your doctor or a specialised centre.
The step-by-step plan

From light to heavy, step by step

The guideline follows a fixed build-up: start as light as possible, and only go a step further when needed. Many people do not even need to go down the whole staircase.

Step 1The injectionsdiagnosis and treatment

Lidocaine on the pain point

Often the first step: an injection of anaesthetic (lidocaine) precisely on the pain point, under the muscle fascia. This is remarkable: it makes the diagnosis and treats at the same time. If the pain disappears immediately, that strongly points to ACNES.

  • For about 1 in 3 people that settles it for good, sometimes after one or a few injections
  • Sometimes an anti-inflammatory is added
  • Side effects are usually mild: a bruise or temporarily more pain
Least invasive, often already enough
Step 2Ultrasound-guided injectionhitting the spot more precisely

Under ultrasound, right on the nerve branch

If an ordinary injection does not help enough, or the pain point is hard to reach, the same injection can be repeated under ultrasound guidance. With ultrasound the doctor sees the right spot and the anaesthetic is placed more precisely around the nerve branch.

  • Same principle as step 1, but more accurately placed
  • Useful when the earlier injections gave mixed results
More precise, still minimally invasive
Step 3PRFif injections do not help enough

Pulsed Radiofrequency

If injections do not bring lasting relief, PRF can be a next step. Through a needle, an electromagnetic field is brought around the nerve branch under ultrasound guidance. Minimally invasive, few complications.

  • Mainly applied by pain specialists
  • Some people avoid surgery after PRF
  • Side effects are rare
Intermediate step, sometimes prevents surgery
Step 4TENSoptional, as support

Stimulation through the skin

TENS stands for stimulation through the skin with light electrical pulses to dampen the pain. It is non-invasive and can be used as an addition, alongside or instead of a further procedure. Whether it helps varies a lot from person to person.

  • Non-invasive and can be used at home
  • Not suitable in every situation (for example with a pacemaker or certain heart conditions), always in consultation with the pain clinic
Optional, as support
Step 5Neurectomythe surgery

Removing the nerve branches

If the previous steps do not help enough, a neurectomy is the next step: through a small incision, the trapped nerve branches are located and divided. This is the gold standard for those who do not respond enough to injections.

  • About 3 in 4 of those operated on are satisfied after the whole journey
  • With persistent symptoms, a second, deeper operation can follow (posterior neurectomy)
  • Some keep residual symptoms or notice no improvement
Most invasive, but often effective
💉

In parallel: the medication is weighed again at every step

Alongside these steps runs a second track: at each step the pain medication is reviewed. In practice it is, as it was for me and for many others, raised again and again for as long as the pain persists. With nerve pain, ordinary painkillers often work poorly; sometimes medicines for nerve pain are used. It is worth being aware of this and always discussing any increase or tapering with your doctor.

What it achieves

The chance of relief, honestly stated

No treatment works for everyone. But the figures show that there is something to gain for most people, provided they get into the pathway. These figures reflect the situation in the Netherlands.

~1 in 3

is permanently pain-free with injections alone, without surgery being needed.

~75%

of operated patients are satisfied after the total treatment journey.

Sometimes enough

For some people, the diagnosis and explanation about posture and load alone is enough to live with.

Honest stays honest: not everyone becomes symptom-free. Some keep residual pain, and in a few the pain shifts or returns. But "not always cured" is something very different from "nothing can be done", and too many people still hear the latter for too long.
Alongside the main route

What else can help

Around the step-by-step plan there are things that make the difference, especially with long-lasting pain.

🩺 Tailored pain medication

With nerve pain, ordinary painkillers often work poorly. Sometimes medicines for nerve pain are used. The role of opiates is questionable and is preferably avoided.

🬉 Posture and load

Because the pain is linked to tensing the abdominal muscles, insight into comfortable postures and gradual build-up of load (sometimes with physiotherapy) can give relief.

🧠 Attention for the person

Long-lasting, disbelieved pain takes its toll. Psychological or social support is simply part of long-lasting pain, not because it is "in your head", but because chronic pain wears a person down.

🏥 A specialised centre

Centres with a lot of ACNES experience, such as SolviMáx at Máxima MC, know the whole journey. A referral there can shorten years of searching.

"Not always cured is something very different from nothing can be done. I heard the latter for far too long."

Sources

Where this information comes from

The step-by-step treatment plan (official guideline)
National ACNES guideline, an initiative of the Dutch Association for Surgery, with GPs, surgeons, gastroenterologists, paediatricians and the patients' federation. Step by step: injections, PRF, neurectomy. See richtlijnendatabase.nl (in Dutch).
1 in 3 pain-free with injections, 75% satisfied after surgery
Treatment results presented from Máxima MC (Roumen et al.): about a third permanently pain-free with injections alone, and about three-quarters of operated patients satisfied after the whole journey.
PRF as an intermediate step (PULSE trial)
Dutch Journal of Medicine on PRF as a less invasive treatment that sometimes prevents surgery. See ntvg.nl (in Dutch).
Where to turn

Further reading and finding peers

Two different needs, two places. For the medical side and referral, and for contact with people going through the same thing.

For care and diagnosis

SolviMáx at Máxima MC is the centre in the Netherlands with the most experience with ACNES, from diagnosis to the whole treatment journey. A referral there can shorten years of searching. Ask your GP whether this is appropriate for you.

mmc.nl/solvimax

For peer contact

There is also a patient foundation for ACNES, with experience stories and peer contact. Useful if you want to speak to people who know the same journey.

stichtingacnes.nl (in Dutch)

🏎 Need help right now?

If there is immediate danger to yourself or someone else: call 112. Feeling low or having thoughts of suicide? In the Netherlands you can call or chat day and night with 113 via 0800-0113. Outside the Netherlands, contact your local emergency line.