This service is multidisciplinary and dedicated to dealing with the complexities of managing patients with both hereditary and non-hereditary paragangliomas. These are rare tumours that are typically benign and can occur throughout the body, although most commonly in the head and neck.
The clinic is located within the QEHB centre for rare diseases and is run six times a year on the afternoon of the 2nd Wednesday of the month.
What are the symptoms of a paraganglioma?
Head and neck paragangliomas can present as a lump in the neck or in the ear. Some patients develop hearing loss and can hear their pulse in their ear which alerts them to the problem. In some cases nerves are involved that might give rise to difficulties in speech and swallowing and weakness of the muscles in the neck. Occasionally weakness of the nerve that moves the muscles in the face can occur. Some paragangliomas secrete increased quantities of the hormone noradrenaline, which may cause severe high blood pressure and trigger spells consisting of headaches, palpitations, anxiety and sweating.
What is the cause of paraganglioma
The majority of tumours have arisen from no obvious underlying cause. Some are genetic in origin and the clinic will be able to identify which of these is the case for any individual.
The paraganglioma service at UHB
The clinic is multidisciplinary and provides a one-stop approach tailored to the individual needs. The majority of patients will be reviewed by ENT and some will have tests of their hearing. Some will be reviewed by an Endocrinologist and a Genetics Consultation with Counseling is available for those with an inherited cause for their condition.
Management
Care is very much done on an individual basis and depends on the site and number of tumours, as well as the problems they are causing. Patients will be offered genetic testing to determine if they have a hereditary predisposition to tumours and whether or not their family members are at risk. Some tumours produce a hormone that can cause symptoms and this can be detected by doing a blood test. Management will be discussed in the clinic and it may be that any individual will have a number of options to consider.
Specific therapies/treatments
Management by surveillance involves having regular imaging to see if an individual has tumours and when present, whether or not they are changing in size. This approach is used for the majority of inherited cases.
Tumour treatment depends on where the tumours are located and what risks are associated with them, and the potential risks of treatment. Treatments include embolisation, radiotherapy and surgery.
If the tumours are producing the hormone noradrenaline, treatment with tablets to control the effects of the hormone is usually required before other forms of therapy can be carried out.
How to contact the service
Tracey Plant – Medical Secretary
Email: Tracey.Plant@uhb.nhs.uk
Tel: 0121 371 4511
Last reviewed: 06 June 2023