Adolescents/Adults with Neglected Congenital Muscular Torticollis. Case Description: An Adolescent with Problems Due to Neglected CMT

Anna Maria Ohman

Health and Rehabilitation/Physiotherapy, University of Gothenburg, Gothenburg

^*Corresponding Author: Anna Maria Ohman, Health and Rehabilitation/Physiotherapy, University of Gothenburg, Gothenburg, Sweden.

Received: 28 April 2025; Accepted: 16 May 2025; Published: 25 May 2025

Introduction

Congenital muscular torticollis (CMT) is a common musculoskeletal abnormality in infants. The head is typically titled towards the affected sternocleidomastoid (SCM) muscle, and the chin is rotated towards the opposite side. Stellwagen et al found that 16% of newborns had torticollis (1), which suggests a higher than previously reported incidence of 0.4%-2.0% (2). CMT can cause limited range of motion (ROM) in both rotation and lateral flexion of the neck. Infants with CMT have an imbalance in muscle function around the neck; it has been found that lateral head righting on the contralateral side is weakened compared with the affected side (3, 4, 5, 6). This imbalance in the lateral flexor muscles in the neck has not been found in healthy infants in a control group (7). It is of great importance to reduce the muscular imbalance in young infants with CMT (6). When there is a remaining imbalance in muscle function it can be hard for a child to achieve symmetric head posture. CMT treated in infanthood gives good or excellent results for about 90-95% of cases, only 5% need surgery (2, 8). The indications for surgery are persistent head tilt, limited passive ROM (PROM) in rotation and/or lateral flexion, and a tight band or tumor in the SCM muscle (9). During the time of skeletal growth, a persistent CMT can affect facial growth, resulting in more or less obvious facial asymmetry (10, 11, 12, 13, 14). The head tilt itself is assumed to cause the facial asymmetry (15). With early treatment most of the facial asymmetry gets corrected during the first years after surgery (16, 17, 18). After skeletal growth has finished it is less likely to improve facial asymmetry. Ippolito and Tudisco found no improvement in facial asymmetry in eight patients all above 20 years of age (19).

Some cases of CMT are undiagnosed or untreated until adolescence or adulthood, resulting in neglected CMT (20). When CMT is neglected and the individual has become an adolescent or adult before getting treatment, surgery is more often needed (16). Patients with neglected CMT often have head tilt already during infancy/childhood but for some reason get no treatment (21). When CMT is not treated it is common that the shoulder on the affected side is elevated (21). Neglected CMT can give neck and/or shoulder pain (22) which improves after surgery (20).  Among adolescents/adults with neglected CMT it is not uncommon that they have a history of meetings with pediatricians, physical therapists (PT) and other health care professionals who say that nothing can be done about CMT. For surgeons, PTs and others with knowledge of CMT and surgery, it is easy to recognize a case in need of surgery as there is often an obvious visual muscular cord tightness on the affected side. Adults with neglected CMT can benefit from surgical treatment (23, 24, 25, 26, 27) which should be corrected regardless of age (24, 25, 26). Both head tilt and lateral shift of the head can markedly improve after surgery (20, 24) giving satisfactory results (27, 28). Torticollis in the neck may cause secondary scolios in the back and release of the contracted muscle can be beneficial for scoliosis (24, 25, 29,30). Choi et al showed significant improvement in scoliosis in all age groups after surgery for CMT (24). There are benefits with earlier surgery as younger age groups showed significantly more improvement than the older groups, i.e. above 18 years of age (24).

Cheng and Tang´s scoring system for assessment of clinical and subjective outcome in CMT, can be used before and after surgery (8, 27, 31). The scoring system includes: rotational deficits (degrees), side flexion deficits (degrees), craniofacial asymmetry, residual band, head tilt, and subjective assessment (cosmetic and functional). After surgery scoring also includes scars. There are four levels: excellent, good, fair, and poor (8) (table I).

Table I: Levels and scores on Cheng and Tang´s scoring system for assessment of clinical and subjective outcome in CMT. Scores after surgery also include scars and therefore have a higher range.

In 2013 guidelines for CMT were published by the American Physical Therapy Association (APTA). They developed CMT classification grades and a decision tree with grades from 1 to 7. Grade 1 is early mild and grade 7 is late extreme (32). APTA upgraded the guidelines both in 2018 and in 2024. CMT classification grades and the decision tree were updated with one more grade: grade 8 is new, which is very late (33). However, there is a lack of information about treatment after surgery and neglected CMT (32, 33, 34).

After surgery the patient wore a brace both day and night. Repetitive cervical ROM training in the early postoperative period is very important (20). Physical therapy is carried out three times a week in a clinical setting (35): stretching, mirror exercises etc., to reestablish perception of midline through integration of visual, vestibular, and proprioceptive systems (36). A home program with daily training is given, depending on age the patient will need more or less help from parents.  Physical therapy should be continued as long as needed (35). The affected side is almost always stronger after surgery and strengthening the opposite side is necessary (31). In the beginning the opposite side often needs to be trained until it gets stronger than the affected side. This imbalance will even out after a while when the training is ended.

Case

A 17-year-old adolescent with left-sided congenital muscular torticollis came to our clinic for a second opinion in August 2019. According to CMT classification grades and the decision tree from 2018 she had grade 8 i.e. very late (33). On Cheng and Tang´s scoring system for assessment of clinical and subjective outcome in CMT, her scores were zero before surgery, i.e., poor in all categories (8, 27, 31).

When the girl was a toddler, her mother was told that nothing could be done about the condition. At the age of 17 the SCM muscle on the left side was hard and unusually underdeveloped, with an obvious muscular cord tightness that was not stretchable (figure 1). There was limited motion in rotation of the neck bilaterally both actively (figure 1 and 2) and passively. PROM in rotation was measured with an arthrodial protractor (2, 7, 8, 21), rotation towards the right was side 60° and towards the left side 50°.

Figure 1: Active rotation to the right.

Figure 2: Active rotation to the left.

There was also a remarkable difference in lateral flexion (figure 3 and 4). When she tried to straighten up her head, there was a lateral shift of the head towards the right (figure 5) and the short SCM muscle caused pain.

Figure 3: Active lateral flexion to the right

Figure 4: Active lateral flexion to the left.

Figure 5: Lateral shift of the head

She had facial asymmetry and scoliosis in her back due to neglected CMT. At our first meeting it was obvious that surgery was necessary for physical therapy to work. Evaluation by a specialist surgeon familiar with neglected CMT was recommended. Surgery with unipolar release was performed in November 2020 and according to the surgeon there was a lot of scar tissue that had to be removed. Directly after surgery a neck brace was applied (figure 6), and used day and night, taken off only when training, showering or eating. The day after surgery she started with active exercises of rotation and lateral flexion of the head, and a combination of these motions. PROM was performed by a PT, and the mother had to learn to perform passive exercises at home done three times daily. One week after surgery stretching and exercises were included to find a straight head position. After a couple of weeks, strengthening of the lateral flexors of the opposite side was introduced. A week after surgery she had problems with the brace which irritated her skin, and instead of the brace kinesiology taping with correcting technique was used on the opposite side. With taping, awareness arises when the head tilts away from the applied tape.

Figure 6: Neck brace worn first week, after irritation to the skin kinesiology taping with correcting technique was used instead.

Six months after surgery her head had a straight position, there was less facial asymmetry, good motion in her neck bilaterally, and the scolios in her back had improved. The lateral flexors on the opposite side were a little bit stronger, which was our goal with the strength training, and this imbalance will even out in time. She also said spontaneously that she had better self-confidence thanks to the improvement after surgery and rehabilitation. On Cheng and Tang´s scoring system, her scores improved from 0 to 17 after surgery. This is 17 of 21 possible scores, i.e. on the level of excellent. At this time, she had obvious facial asymmetry which is why she did not get a full score in this part. At follow-up in March 2025, four and a half years after surgery, her head is mostly in a straight position with a minor tilt to the left when she gets tired. PROM in rotation 70° bilaterally which is in the normal PROM in neck rotation for adults (37). PROM for lateral flexion was equal on both sides but there was a little tension on the left side when her right ear reached her right shoulder in lateral flexion towards the right side. There was also a minor difference in strength in the lateral flexor, when tested manually she feels that she can push a little more with the left side. To prevent problems in the future, she was given strengthening exercises for lateral flexors on the right side. She still feels that she got a new life after surgery. She mentioned that when she was younger, before surgery, she got a lot of annoying questions about her head position that she is now pleased to be rid of.

Discussion

The described case had severe limited PROM in rotation bilaterally in the neck before surgery. In my experience, most adults with neglected CMT have only limited rotation toward the affected side, normal rotation is usually found on the opposite side. In this case cord tightness on the affected left side was severe and gave an unusually short and very small SCM muscle, probably contributing to limited active and passive ROM in rotation bilaterally. After surgery for unipolar release on the left side and physical therapy, she had equal rotation in her neck bilaterally and still had at her four-and-a-half-year follow-up. PROM in neck rotation decreases as age increases (38, 39, 40, 41). In contrast PROM in lateral flexion of the neck seems to remain almost unchanged (42). Based on the author’s experience, if a young adult lies on their back with their head outside the bench to allow free movement, the evaluator can passively move the head, ear to the shoulder.

For the described case unipolar release gave excellent results. In a study about neglected torticollis in adolescents/adults, Funao et al concluded that unipolar sternocleidomastoid release has benefits over bipolar release. Unipolar release results were just as good as bipolar in their study and were less invasive, minimizing surgical scars and avoiding nerve damage (20). Others find bipolar release to be superior to unipolar (28) or use of other techniques i.e. using z-plasty (32). The imbalance in strength of lateral flexors in the neck usually also persists after surgery, with the affected side stronger. Based on the author’s experience, it is only a few of very young infants that will not have this imbalance, i.e. infants below the age of six to seven months at the time of surgery. Strength training is started three to five weeks after surgery, depending on how the patient manages the exercises. Often the unaffected side needs to gain more strength than the affected side temporarily to achieve a spontaneously relaxed symmetric head position. Muscle strengthening exercises are strongly recommended for children older than four years according to Choi et al (24). Also, younger patients need to be stronger on the opposite side to overcome habitual tilting of the head to the affected side (6). In a clinical setting, you can see that patients have a problem with perception of midline. They feel their head position is tilted to the opposite side when they are straight and when they tilt to the affected side they feel their head position is straight. This is also seen in younger children aged four to five years who can confirm this when asked. For older patients, the tilted position has been the normal for many years and it takes time to relearn. Based on the author’s experience it takes a long time for most adolescents/adults who have tilted their head for several years to get good perception of midline.

Older patients often say they got a new life after surgery, for some also better self-confidence. Adolescents and adult patients with neglected CMT are often very motivated for training, and surgery is often a prerequisite for rehabilitation to work. Gaining good PROM in the neck after surgery is the easier part, getting stronger on the unaffected side and especially reestablishing perception of midline can demand considerable effort from the adolescent/adult. Some who have surgery in childhood need more surgery years later (21). The SCM muscle grows from 4 cm in infanthood to 14 cm at 13 years of age (43). If there is any fibrosis left in the muscle this may cause recurrent problems. For the adolescent/adult with neglected CMT, it is not uncommon for them to have had many unsuccessful visits before they meet a professional who understands the need for surgery. During the years the author has met about 30 patients ranging from 16 to 30 years old who have had a history of neglected CMT and needed surgery. Several of the patients had met different professionals: physicians, physiotherapists, naprapaths, chiropractors etc. who lacked enough knowledge of CMT and surgery. These patients were told that nothing could be done, two of them who got botulinum injections, which according to them only resulted in pain. Adolescents/adults with neglected CMT are generally resistant to any non-surgical treatments (20). Funao et al found in their series no cases of success with botulinum injections (20). One of the author’s patients was a young 28-year-old man who had met a lot of different professionals during a period of seven years and not one suggested surgery. He could explain his condition so well on the telephone that it was obvious he needed surgery even before we met.  Earlier he had been given stretching exercises and botulinum injections without any positive effect – they only resulted in pain. A couple of weeks after surgery the case was very pleased and spontaneously said “This is like having a new life.” During the years I have heard the same from several adult patients in the same situation. Improved quality of life after surgery for neglected CMT can be seen in several studies (28, 35). Høiness et al found significant improvement both in health-related quality of life (HRQoL) and clinical outcomes in children, adolescents and young adults who underwent surgical release for neglected CMT (35).

Conclusion

There is a lack of knowledge about severe cases of CMT in the health care system resulting in neglected CMT that causes problems for the individual. Surgery can be of great benefit to an adolescent/adult. More awareness among health care professionals is required to find those in need of surgery in an optimal time and to avoid unnecessary suffering. Guidelines for surgery for all ages and for neglected CMT are needed.

Funding: This case report received no external funding.

Institutional Review Board Statement: Ethical review and approval were waived for this study, due to Swedish Ethical Review Authority Statement: “If the intended publication contains only accounts of diagnosis and treatment, or of some other course of events, this practice should be understood not to be a matter of research that must be ethically tested” (https://etikprovningsmyndigheten.se/faq/kravs-etikprovning-for-fallrapporter/).

Informed Consent Statement: Informed consent was obtained from the case to use photos.

Conflicts of Interest: The author declares no conflicts of interest.

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