What is neuralgic amyotrophy?
Neuralgic amyotrophy (NA) is a disorder involving nerve pain and muscle wasting. In the Netherlands, NA is often referred to as 'neuralgic shoulder amyotrophy' or 'Parsonage-Turner syndrome'.
Episodes of severe pain
Neuralgic amyotrophy is characterized by episodes of severe pain in one or both shoulders and arms. After a few hours to several days, the pain is followed by weakness and wasting of the muscles in the affected area. It is caused by inflammation of the nerve plexus in the arm (brachial plexus brachialis), a branching network of intersecting nerves. The pain may last for a few weeks and is often unbearable. The muscle weakness causes difficulty with arm movements such as stretching, working above shoulder height, opening bottles or jar lids or holding a pen. Sometimes the shoulder blade sticks out from the back like a wing (scapula alata). Recovery of the nerves, and restoration of muscle strength and endurance, usually takes several months to a few years and is often incomplete. Many patients are left with chronic symptoms of pain and fatigue in the affected shoulder and arm.
Hereditary or non-hereditary
Two forms of NA are known:
- Hereditary NA (hereditary neuralgic amyotrophy or HNA).
- Non-hereditary NA (idiopathic neuralgic amyotrophy, Parsonage-Turner or INA syndrome).
The idiopathic form occurs about ten times more often than the hereditary form. According to estimates, NA is diagnosed in about 17,000 people per year in the Netherlands.
Consultations for NA
Radboudumc offers various consultations for patients who have or may have NA or other nerve injuries in their shoulders and arms.
You possibly have NA
Do you think you might have NA? Then your doctor or GP may refer you to our Neurology outpatient clinic, where you will be seen by one of the neurologists in training. He or she will determine whether you have NA or another disorder. This takes place under the supervision of one of our experienced neurologists with expertise in muscle and nerve disorders. If the examination shows you indeed have NA, and you want to know more about further treatment, we will refer you to KINOS Revalidatie. This is an independent treatment and rehabilitation center in Nijmegen with which Radboudumc cooperates closely. The center has a specialized rehabilitation team for NA, including a rehabilitation specialist from Radboudumc.
You have NA
If you are diagnosed with NA and you have chronic symptoms that do not go away by themselves or following treatment, then your doctor or GP may refer you to the Plexus clinic (a specialized outpatient clinic) of the Department of Rehabilitation. The Plexuspoli provides a multidisciplinary consultation. During a single morning, you are examined by four different specialists: a neurologist, a rehabilitation specialist, a physical therapist and an occupational therapist. At the end of the morning, a recommendation for rehabilitation and treatment is provided. When making this recommendation, we consider the most suitable care, preferably near your home. This means that your further treatment will not necessarily take place at Radboudumc. You may be referred to a different hospital or rehabilitation center, or to a therapist near your home. A copy of the diagnosis and treatment recommendations will be sent to you. After a few months, you may be asked to return to the Plexuspoli for a checkup to determine whether the treatment plan is proceeding as desired.
Making an appointment
To make an appointment at the Neurology outpatient clinic or the Plexuspoli, you need a referral from your doctor or GP. Would you like to make an appointment without a referral? This is possible, but be aware that the costs of this appointment are not covered by insurance.
You can make an appointment at our Plexus Clinic if you live in another country and/or you do not have a Dutch healthcare insurance. However, you will need to provide for the costs involved beforehand. In addition we need a copy of all your relevant medical information. The department of Rehabilitation can tell you more about the procedure; they can be contacted via firstname.lastname@example.org.
The waiting time for the Plexus clinic is a few months. The long waiting time is partly caused by the large number of patients with NA. Every year, about 17,000 new patients are diagnosed with NA in the Netherlands, but our Plexus clinic can see no more than four patients per week. If this waiting time is too long for you, then a good alternative is to have your diagnosis confirmed by a neurologist, who can refer you to KINOS Revalidatie for treatment. The waiting times at this center are shorter.
Are you already looking for a therapist or rehabilitation center with experience in treating NA during your waiting time? Or are you looking for a physical therapist specializing in NA? We have can provide you with a list of specialized therapists in the Netherlands.
Treatments and examinations
Treatment of diaphragmatic paralysis in NA can be done by self-administered measures, overnight ventilation, or (if there is no recovery after 3-4 years) reefing the diaphragm.
to the treatment
The Radboudumc has several consultation hours for patients with (possible) neuralgic amyotrophy or other injuries of the nerves in the shoulder and arm.
to the treatment