Clinical follow up of 18 patients with NF1 with symptomatic plexiform neurofibromas
| No | Site of lesion | Latest follow up (months) after PET | Clinical outcome |
| 1 | Prevertebral at L1 | 9 | Persistent pain and neurological deficit |
| 2 | Pelvis | 26 | Asymptomatic after surgery and DXT |
| 3 | L brachial plexus | 25 | Died of lung metastases after surgery and DXT |
| 4 | L thigh | 8 | Died of lung metastases, after surgery and chemotherapy |
| R lower limb | |||
| 5 | L thigh | 8 | Asymptomatic after surgery |
| L axilla | |||
| 6 | R thigh | 10 | Asymptomatic after surgery |
| 7 | L thigh (medial) | 15 | Asymptomatic after surgery |
| L thigh (post) | |||
| 8 | L supraclavicular fossa | 3 | Neurofibroma excised, histology benign Persistent pain on left side of neck |
| 9 | L buttock | 12 | Pain resolved, no further increase in size of lesion |
| 10 | R lower limb | 12 | Pain on prolonged standing |
| 11 | R thigh | 9 | Pain resolved No further increase in size of lesion |
| 12 | L popliteal fossa | 4 | Pain resolved, no further change in size of lesion or deficit |
| 13 | R cervical region | 10 | Excision of lesion, benign neurofibroma, pain resolved |
| 14 | Pelvis | 26 | Unchanged |
| 15 | L popliteal fossa | 23 | Asymptomatic after excision of benign neurofibroma |
| 16 | Retroperitoneum, | 3 | Symptoms unchanged |
| R popliteal fossa | |||
| L popliteal fossa | |||
| 17 | L upper limb | 8 | Pain resolved, neurofibroma reduced in size |
| 18 | R lower limb | 9 | Symptoms unchanged |