Table 3

Clinical follow up of 18 patients with NF1 with symptomatic plexiform neurofibromas

No Site of lesion Latest follow up (months) after PET Clinical outcome
1Prevertebral at L19Persistent pain and neurological deficit
2Pelvis26Asymptomatic after surgery and DXT
3L brachial plexus25Died of lung metastases after surgery and DXT
4L thigh 8Died of lung metastases, after surgery and chemotherapy
R lower limb
5L thigh8Asymptomatic after surgery
L axilla
6R thigh10Asymptomatic after surgery
7L thigh (medial)15 Asymptomatic after surgery
L thigh (post)
8L supraclavicular fossa3Neurofibroma excised, histology benign Persistent pain on left side of neck
9L buttock12Pain resolved, no further increase in size of lesion
10R lower limb12Pain on prolonged standing
11R thigh9Pain resolved No further increase in size of lesion
12L popliteal fossa4Pain resolved, no further change in size of lesion or deficit
13R cervical region10Excision of lesion, benign neurofibroma, pain resolved
15L popliteal fossa23Asymptomatic after excision of benign neurofibroma
16Retroperitoneum, 3Symptoms unchanged
R popliteal fossa
L popliteal fossa
17L upper limb8Pain resolved, neurofibroma reduced in size
18R lower limb9Symptoms unchanged