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Your first visit

If this is your first visit to the clinic we understand that it can be an anxious time. It is important to understand that not everyone who is referred to this clinic will have Neurofibromatosis Type 2.

Why you have been referred

You may already have a diagnosis of Neurofibromatosis Type 2, or you may be referred because:

  • a family member has been diagnosed
  • you have been diagnosed with a type of tumour that can be connected with Neurofibromatosis Type 2 and your leading clinician wants to make sure that you do not have Neurofibromatosis Type 2
  • your neurologist or surgeon may want another opinion about your symptoms.

We recognise that you may have seen many specialists before you come to us, and that your symptoms may have been present for many months.

The clinic is 'multidisciplinary', which means that a group of healthcare professionals is working together to provide the best care. We aim to offer most of the investigations and appointments with specialists you need in one visit; this saves repeat visits to the clinic and allows professionals to make timely decisions about your health.

At the first visit you are likely to meet the Consultant Geneticist and/or Consultant Neurologist. Sometimes a Genetic Counsellor may have telephoned you before your hospital visit to ask about your family history; if not this will be taken at your first clinic appointment.

You may also see the:

  • Audiologist
  • Ophthalmologist
  • Nurse Practitioner
  • Surgeon
  • Physiotherapist
  • Psychologist.

It is a good idea to bring someone with you to the clinic, even if you would rather they remain in the waiting room.

Getting a diagnosis

Neurofibromatosis Type 2 is a complex disorder to diagnose; further tests are often required to reach or to exclude the diagnosis. Sometimes we cannot be absolutely certain of the diagnosis and further clinic appointments might be necessary.

It can be helpful to write down any questions you think of before the visit. We can also arrange a second visit or home visit/telephone call with the Nurse Practitioner or Genetic Counsellor to go through questions that you might have following your clinic appointments.

You will get a copy of the letter sent to your GP after the appointment.