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Your neurofibromatosis appointment

 

This page is for appointments at the neurofibromatosis clinic.

For information about our psychology appointments, please see our psychology service page.

How to get an appointment

Your GP or hospital consultant can refer you. You cannot self-refer.

Changing or cancelling your appointment

Phone: 020 7188 1029

Email: gst-tr.nfadmingstt@nhs.net

Before your appointment

Please bring:

  • a list of medicines you are taking, including dose
  • the dates and names of hospitals where you have had recent scans
  • names of doctors and hospitals who have seen you before

What to expect at your appointment

Your first appointment usually takes 1 to 2 hours.

You may see more than 1 member of our team during your visit.

We'll ask you about your medical history and symptoms. We'll do a general clinical and neurological examination. This includes your:

  • skin
  • bones
  • eyes
  • chest
  • stomach
  • nervous system

We'll ask your permission before doing these examinations.

When coming for your appointment you'll see we've a number of safety measures to prevent the spread of coronavirus (COVID-19).

After your appointment

We'll send a letter to your GP or other relevant medical professionals.

We may refer you:

  • for further assessments and investigations
  • to another healthcare specialist

You can contact our nurse specialists if you need further advice.

Neurofibromatosis type 2 (NF2) patients 

Every year you'll have a review. We'll order any tests and appointments that you need before your review. This usually includes an MRI brain scan and a hearing assessment. We'll support you with any other NF2-related needs.

At your yearly review appointment we'll give you your results and discuss treatment plans.

We'll advise you on managing new symptoms, and arrange other tests and reviews if you get new symptoms.

Every 3 years you'll have an MRI scan of the spine.