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PubMed This is a summary of 23 peer-reviewed journal articles Updated
Physical Therapy

Standard of Care: Treatments and Therapies for Neurogenic AMC

At a Glance

Treatment for Neurogenic AMC requires an individualized, multidisciplinary approach focused on maximizing functional independence. Standard care involves early intensive physical therapy, functional orthopedic surgery, and dedicated management of respiratory, swallowing, and pain needs.

Managing Neurogenic Arthrogryposis Multiplex Congenita (AMC) requires a dedicated, multidisciplinary team of specialists [1][2]. Because every person’s genetic makeup and physical presentation are unique, there is no “one-size-fits-all” protocol [3][4]. Instead, care is highly individualized, focusing on maximizing independence and comfort [5].

The Foundation: Early Rehabilitation

The most critical part of care is intensive rehabilitation [1]. Physical and occupational therapy should begin as soon as possible [6][2].

  • Stimulating Active Movement: Therapy focuses on more than just passive stretching. It aims to encourage the use of muscles to actively move the joints [6][5].
  • Strengthening: By identifying and working with the muscles that do receive nerve signals, therapists help build the strength needed for milestones like sitting or reaching [6][2].
  • Orthotics and Bracing: Custom braces or cast-rod constructs (a specialized type of casting used to gently improve foot and knee positions) are often used to maintain the progress made during therapy [7][2].

Orthopedic Surgery: Function Over “Normal”

In AMC, the goal of orthopedic surgery is not necessarily to achieve a full “normal” range of motion. Instead, surgeons focus on optimizing position for function [8][9].

  • Functional Positioning: A successful surgery might aim to position an arm so the hand can reach the mouth for eating, or align the legs to make standing or sitting in a wheelchair more comfortable [10][11].
  • The “Proximal-to-Distal” Approach: Surgeons often address the joints closest to the body first (like the shoulder or hip) before moving to the hands or feet, as this builds a stable foundation for movement [11].

Understanding the Risks and Limitations

Surgical intervention in AMC is complex and carries specific risks that must be understood:

  • Hip Surgery Challenges: Early “open reductions” (surgery to put a dislocated hip back in its socket) often have poor short-term outcomes in AMC. There is a high risk that the hip will dislocate again during growth, frequently requiring repeat surgeries [12][13].
  • Fracture Risks: After orthopedic surgery, metallic hardware (like pins or plates) is often used. Surgeons must carefully plan any hardware removal because the bones may be fragile, requiring specialized orthopedic care to prevent fractures [14].

Managing Respiratory, Pain, and Feeding Needs

For those with syndromic or severe neurogenic forms, the medical team must also support the internal systems affected by weak muscles [15].

  • Respiratory Support: If the chest wall muscles are weak, respiratory distress or underdeveloped lungs (pulmonary hypoplasia) may occur [16][17]. Non-invasive ventilation (like BiPAP) is frequently needed, especially during sleep [16].
  • Feeding and Swallowing: Oropharyngeal dysphagia (difficulty swallowing) is common [18]. Because of the risk of “silent” aspiration, a Videofluoroscopic Swallow Study (VFSS) is often used to ensure safe feeding [19][20]. If swallowing is unsafe, a feeding tube (G-tube) may be necessary to ensure proper nutrition [21].
  • Pain Management: Chronic joint strain and pain are a daily reality for many, and must be proactively managed through physical medicine, adapted therapies, and joint protection strategies from an early age [22].

By combining these therapies and medical interventions, the care team works to provide the best possible environment for functional success [23][1].

Common questions in this guide

What is the main goal of physical therapy for Neurogenic AMC?
The primary goal is intensive rehabilitation to maximize independence. Therapists focus on stimulating active muscle movement and building strength to help achieve milestones, rather than just relying on passive stretching.
Will orthopedic surgery give my child a normal range of joint movement?
Orthopedic surgery for AMC focuses on optimizing position for daily function rather than achieving a completely 'normal' range of motion. The goal is to align joints to help with practical activities like hand-to-mouth eating, sitting, or standing comfortably.
Are there risks associated with AMC hip surgery?
Yes, early surgeries to fix a dislocated hip in AMC have a high risk of redislopcation as the child grows. These procedures often have poor short-term outcomes and frequently require repeat surgeries.
How does Neurogenic AMC affect breathing and feeding?
Weak chest and throat muscles can lead to respiratory distress and difficulty swallowing (dysphagia). Patients may need non-invasive ventilation like BiPAP during sleep, and special swallow studies to ensure they can eat safely without silent aspiration.
Why is removing hardware after orthopedic surgery complicated in AMC?
Patients with AMC can have fragile bones. Removing metallic hardware like pins or plates after they heal requires very careful planning by orthopedic specialists to prevent accidental bone fractures.

Questions to Ask Your Doctor

Curated prompts to bring to your next appointment.

  1. 1.What are the specific functional goals for an upcoming orthopedic surgery—for example, will this help with hand-to-mouth movement or standing?
  2. 2.Given the risk of fragile bones in AMC, what precautions will be taken if implants or hardware need to be removed?
  3. 3.Is a sleep study necessary to evaluate for nocturnal respiratory issues that might not be obvious during the day?

Questions For You

Tap a prompt to share your answer — we'll use it plus this page's context to start a tailored conversation.

References

References (23)
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    Characterization of a group unrelated patients with arthrogryposis multiplex congenita.

    Valdés-Flores M, Casas-Avila L, Hernández-Zamora E, et al.

    Jornal de pediatria 2016; (92(1)):58-64.

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    Consensus-based recommendations for the rehabilitation of children with arthrogryposis multiplex congenita: an integrated knowledge translation approach.

    Dahan-Oliel N, Cachecho S, Araujo C, et al.

    Orphanet journal of rare diseases 2025; (20(1)):168 doi:10.1186/s13023-025-03671-x.

    PMID: 40205440
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    Surgical timing and management patterns across joints in arthrogryposis: a systematic review.

    Mounsef PJ, Laroche M, Ben Letaifa R, et al.

    Journal of pediatric orthopedics. Part B 2026; doi:10.1097/BPB.0000000000001332.

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    Genetics and Classifications.

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    Journal of pediatric orthopedics 2017; (37 Suppl 1()):S4-S8 doi:10.1097/BPO.0000000000000997.

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    Rehabilitation in Patients Diagnosed with Arthrogryposis Multiplex Congenita: A Systematic Review.

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    Journal of children's orthopaedics 2015; (9(6)):427-32 doi:10.1007/s11832-015-0689-1.

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    Cast-rod construct for gradual correction of fixed knee flexion deformities in young children with arthrogryposis: Technical note and preliminary results.

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    Reorientational Proximal Femoral Osteotomies for Arthrogrypotic Hip Contractures.

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    Collaborating to advance interdisciplinary care for individuals with arthrogryposis.

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    American journal of medical genetics. Part C, Seminars in medical genetics 2019; (181(3)):273-276 doi:10.1002/ajmg.c.31741.

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    Open Reduction of Hip Dislocation Is Associated with Higher Rates of Proximal Femoral Growth Disturbance in Patients with Arthrogryposis Multiplex Congenita Than Idiopathic DDH: A Dual-Center Retrospective Cohort Study.

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    Short-term results of early (before 6 months) open reduction of dislocated hips in arthrogryposis multiplex congenita.

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This page provides educational information about Neurogenic AMC treatments and therapies. Always consult with your multidisciplinary healthcare team to determine the safest and most effective individualized care plan.

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