Trigeminal Foundation

Nerve Injuries

Helping to prevent, educate and manage

Patients Group

Many of these nerve injuries are permanent, as a result many patients have significant pain, daily functional problems, (eating, speaking, drinking, kissing, sleeping), and psychological problems. It is difficult news to hear that you may be left with painful altered sensation, (for example pins and needles), or other pain for the rest of your life. When these complications happen it can be a devastating and isolating experience.

The Patients Group functions presently take 3 formats:-

Education, online forums, and developing better care

1. Education is ‘key’ in preventing unnecessary anxiety and stress related to any health problem.

The patient should be provided with reliable information, which is evidence-based information where possible, to educate patients on how best to cope and manage their nerve injuries.

2. Online forum

‘A problem shared is a problem halved’.  Patient Forums can do this, for example with a monthly blog and forum. By facilitating patient conversations about lingual nerve injuries we can develop a community where we can help each other.

3. Developing better care with Patients Days 

Many methods can be used to assist the patient move on from these unfortunate complications including sympathetic consultation, pain management using medication, surgery on rare ocassions and more recently psychological support.

One of the most powerful developments in managing permanent nerve injuries are:-

Psychiatric and psychological therapies

A number of recent studies have reported reduced quality of life, impaired psychosocial functioning, and elevated levels of anxiety and depression in patients suffering from orofacial pain with a neuropathic component, such as patients diagnosed with trigeminal neuralgia and idiopathic continuous orofacial neuropathic pain.

Assessment and treatment by a Liaison Psychiatrist and Clinical Psychologist can help in the management of these psychological changes.  The iatrogenic nature of many nerve injuries can compound pre-existing mental health problems, and evidence suggests that treating concomitant anxiety and depression can lead to a decrease in pain.

Therapies with the best evidence for chronic pain are cognitive-behavioural therapy (CBT) and Acceptance and Commitment Therapy (ACT). These therapies are not intended to lower the patients perceived pain levels, but enable the patient to better cope with their pain. This often includes the acceptance of a chronic condition.

Cognitive-behavioural therapy (CBT) can be delivered at a number of levels in a stepped care model.  In the lower levels of the stepped care model techniques such as guided self help are used, placing emphasis on the patient to maintain diary sheets and other interventions with the support and guidance of a trained worker. Self help patient resources are often CBT based, are suitable for a range of conditions and can be carried out over the phone or face to face by a trained worker.

Further up the stepped care model is pure CBT, for problems of a more complex and longstanding nature. CBT is delivered by a trained therapist, usually in a clinical setting.

During CBT, the therapist will first assist in identifying the problem (along with the behaviour, thoughts and feelings that may be linked in with the problem). Once the problem has been explored, the therapist will help you examine your thought and behaviour patterns and help you to work on ways of changing these. If you access this type of therapy you will often be given a set number of sessions that typically last 50 minutes per session. Therapists will usually set “homework tasks” which are completed between sessions. Homework tasks may include carrying out activities such as thought monitoring and entering these into a thought diary, or practicing specific behaviours through what is known as “behavioural exposure’.

Cognitive behavioural approaches are delivered in a number of settings, with various differing protocols. While the cognitive elements of the programme are usually the province of psychologists, other staff working alongside them, such as physiotherapists, occupational therapists, nurses and doctors, are required to improve their psychological understanding and skills to enable them to contribute to the treatment package. Not surprisingly the outcome varies greatly between individuals, with some subjects finding the ideas life-changing in their relevance and usability, while others struggle to make even small changes. Studies demonstrate that although there is some diminution in effect with time, most patients never return to their previous levels of distress or disability.

Delivering effective CBT in the group format described above requires considerable skill, an effective team and not a little organization and resources. Because of this it is easy to do badly. Limitations of training, therapist availability and lack of resources are barriers to the penetration of these techniques into the current health system: alas it is often easier to write a prescription or repeat an injection than engage the person in a comprehensive programme of CBT.

Acceptance and Commitment Therapy (ACT) is a third wave behavioural therapy (along with Dialectical Behaviour Therapy and Mindfulness Based Cognitive Therapy) that uses Mindfulness skills to develop psychological flexibility and help clarify and direct values-guided behaviour. ACT, does not attempt to directly change or stop unwanted thoughts or feelings, but aims to develop a new mindful relationship with those experiences to free a person up to be open to take action that is consistent with their chosen life values.

There  is increasing evidence for ACT’s use with chronic pain in both a group and individual setting.

Other non surgical interventions include: education, TENS, Peripheral nerve stimulation, massage , Acupuncture and Exercise/ reconditioning, These strategies have  mainly been explored for chronic pain management applicable to many patients with permanent Trigeminal nerve injuries.

Combined therapies:
 Such combinations included CBT, surgery, medication  with 5% lidocaine patches and or Botox where appropriate.

Our team are among the first in the UK to report using these strategies to assist patients with trigeminal nerve injuries. The aim is to identify and establish the best methods, either for individual or group therapy, to get patients ‘back on their feet’.