In 2012-13, Torticollisguide / Neli Weiss conducted a study of Danish torticollis patients’ symptoms and well-being in everyday life.
The result was a report (in Danish) published on the Danish Dystonia Association’s website.
Inspired by my experience of suffering from Torticollis and studies worldwide, I created a questionnaire about possible causes, treatment, diagnosis, and how to handle everyday activities when you have Torticollis. 84 torticollis patients participated. You can read the main results in the following short article, printed in the Danish Dystonia Magazine.
Who were the participants?
66 women and 18 men participated anonymously in the study. The participants came from all over Denmark. The youngest participant was 26 years old, and the oldest was 75 years old.
The duration of the participants’ illness was evenly placed in groups, counting patients with symptoms for 1-10 years, 10-20 years, and over 20 years. Among the participants, one had had Torticollis for 1 year and another for 53 years. Participants’ average age of onset of Torticollis was 39 years.
What could be the possible causes of Torticollis?
A part of the study revealed what the participants thought was causing Torticollis. In the period leading up to getting the diagnosis most participants had experienced:
- stress (25%)
- repetitive movements (17%)
- mental trauma (15%)
- physical accident / shock / break / fall (12%)
- a crooked spine (12%)
Is pain one of the symptoms?
The study showed that 8 out of 10 participants had pain to a greater or lesser degree. One in five participants had sleeping problems due to pain or muscle contractions, while half of the participants did not suffer from sleep problems at all.What are the experience with medication?
The study showed that 99% of Torticollis patients had tried many different medicinal products. The participants could write the name of 3 medicinal products. The result was a long list of medicine, from painkillers to psychotropic drugs. 6 out of 10 participants have taken medicine for over 5 years (59%).
Everyday tasks
Another part of the study questioned whether the participants felt limited or challenged in their daily activities. 72% answered ‘yes’. Approximately 50% of the participants had difficulty watching TV, reading, and 72% had trouble performing precision work such as writing or threading a needle.
Many participants answered that they had difficulty controlling the Torticollis symptoms during stress (84%) and nervousness (78%). Only a third of the participants could cope with daily activities more or less without effort.
Torticollis in social contexts
Torticollis patients might feel mentally and socially inhibited. The results showed that 8 out of 10 participants felt uncomfortable among many people. 7 out of 10 had been worried about the reaction of others. Many wanted to hide the symptoms (76%) and avoid public places (59%). Around half of the participants were worried about getting on a trip or a longer to travel.
Many participiants worried about the future (73%). The majority of patients had experienced being anxious (62%), sad and depressed (72%), and irritated and bitter (59%) within the last 14 days. In addition, torticollis negatively impacted family life (53%) and friendships (44%). The results should be seen in the light that all people can experience ups and downs. It could be relevant to compare the results with the general population.
The overall results on the participants’ well-being in everyday life indicate a need for more knowledge about torticollis patients’ way of handling psychological and social challenges. Around half of the participants answered that torticollis impacted their well-being negatively. The study showed that 4 out of 10 participants needed to talk to other patients, and 6 out of 10 asked for more knowledge about torticollis.
Torticollis patients' experiences with Botulinum toxin treatment
The study was also about the participants’ experience with treatment. On average, the participants had received treatment with Botulinum toxin for 8 years, and 36% of their time with the diagnosis. The participants were more or less satisfied with the Botulinum toxin effect (86%). However, a small part answered that it had no effect (4%) or that the effect was negative (4%). Most had experienced side effects from treatment with Botulinum toxin (62%). The participants described 23 different side effects of the treatment. The most frequent side effects were; difficulty swallowing (41%), “head drop” (16%), stiffness in the neck (7%), stinging, burning sensation and pain (4%), weak joints (4%), sleeping muscles (4%).
How are the symptoms getting better?
The study also showed how different activities affected the symptoms of Torticollis in everyday life. The activities most positive were: “supporting the head” (60%), relaxing (58%), and lying down (42%). About 25 % of the participants answered that alcohol had a relieving effect on the symptoms. On the other hand, the most negative activities were; fatigue (64%), physical exertion (60%), and carrying an object (31%). Although many considered running (28%), driving (36%), and cycling (32%) as negative activities for Torticollis, many also responded that the activities did not make a big difference.
Torticollis patients' experiences with alternative treatment
A big part of the participants had tried physical therapy (84%), massage (51%), and acupuncture (47%). In addition, around one in three participants had tried gymnastics (37%), a chiropractor (34%), and craniosacral therapy (28%). Not many had tried treatment with a psychologist/psychiatrist (8%). The treatment that was considered the most positive were physiotherapy (81.4%), gymnastics (76%), massage (71%), and craniosacral therapy (52%). In addition to the prescribed forms of treatment, the participants described having good experiences with water gymnastics, pilates, relaxation, and fitness.
How can the treatment process be improved?
In the survey, most participants were satisfied with the overall treatment (72%). There was a slight tendency for participants to be more satisfied the longer they had Torticollis. However, every sixth person suggested that the treatment could be different or better (62%). The participants suggested in their own words their ideas for improvements.
For example, 9 participants proposed a more coherent treatment effort with greater collaboration between health disciplines and empathy from doctors and therapists. One participant requested “… not just to be seen as a neck, but as a whole person”. According to the participants, there was also a need to obtain information about different forms of treatment, for example, alternative treatments such as Biopathy and Reflexology. In addition, some participants were upset about the risk of misdiagnoses, for example, that Torticollis was mistaken for mental illness.
7 participants requested more medical information, more time, and information at the hospital, and more knowledge about Torticollis from general practitioners and physiotherapists. To avoid negative future images of the disease, information about Torticollis should be more detailed about treatment, symptoms, and positive prospects.
12 participants wanted to improve the professional’s handling of the onset of the symptoms and the diagnosis. Many requested a faster diagnosis and more information about Torticollis from the beginning. Several also pointed out that there was a need for rapid initiation of treatment with Botulinum toxin, relaxation, and physiotherapy.
16 participants had specific wishes for changes in the Botulinum toxin treatment. For example, to obtain more knowledge about the side effects of Botulinum toxin treatment and about the disease in general from a neurologist. Furthermore, some patients wished that the neurologist could check the neck thoroughly before the injection.