What is the treatment of scoliosis in neurofibromatosis?

Question

Hello doctor,

My daughter (13) with NF1 is developing worsening scoliosis measuring 32 degrees on a recent x-ray alongside increasing plexiform neurofibroma near the spine. An orthopedist recommends bracing, while a neurosurgeon suggests that tumor resection might be necessary before addressing spinal curvature.

Conflicting specialist opinions create treatment paralysis. Previous partial tumor resection at age 8 with significant regrowth over the past 18 months. An additional complication of recent puberty onset with accelerated growth potentially affects both scoliosis progression and tumor growth.

Insurance approved a second opinion consultation but requires significant out-of-pocket costs for a multidisciplinary NF center evaluation. Need guidance prioritizing interventions and creating a coordinated treatment approach between seemingly competing medical issues, with specialists offering contradictory recommendations.

How interactive are these conditions in NF1?
Would growth hormone assessment be appropriate given height below the 10th percentile?

Kindly help with neurofibromatosis management!

Answer 1

Hello,

Welcome to icliniq.com.

I read your query and can understand your concern.

It is advisable to seek guidance from a neurosurgeon, as there is currently no cure for neurofibromatosis type 1, only supportive treatments. For scoliosis, consulting a neurosurgeon is recommended for growth management. It is preferable to visit a reputable center or sponsor, as lifelong management is necessary.

Tumors are generally benign, so it is important to seek opinions from at least two qualified doctors before proceeding. The investigations include an MRI of the spine, and a GH assessment (growth hormone) should be conducted. The differential diagnosis includes tumors, with the probable diagnosis being NF1. The treatment plan involves a multispecialty appointment, and follow-up will focus on supportive care.

I hope this information helps you.