Neurofibromas and Their Impact on Scoliosis Treatment

Neurofibromas compressing scoliosis?

Dear Dr.
Jian,
I recently took my son to see an orthopedic specialist due to his complaints of back pain.
An MRI revealed that he has scoliosis caused by a neurofibroma pressing on his spine.
Could you please advise me on which authorities and experts are currently well-versed in surgical options for this condition? Additionally, after surgery, is there a possibility that the neurofibroma will regrow? Are there any specialized teams or centers where we can seek help for this matter?
(P.S.
I am also a nursing professional, but I am not familiar with this rare genetic disorder.)
Thank you very much for your assistance.

Sincerely,
Jiang's mother

Jiang Mama, 30~39 year old female. Ask Date: 2010/03/10

Dr. Jian Yingxiu reply Rare Disease

After surgery, neurofibromas may regrow, so please consider this carefully before proceeding.
Scoliosis does not always require surgery; please discuss the necessity of surgery with your trusted physician.
Thank you.

Reply Date: 2010/03/10

More Info

Neurofibromas are benign tumors that arise from the nerve sheath, commonly associated with Neurofibromatosis type 1 (NF1). In the context of scoliosis, neurofibromas can exert pressure on the spinal cord or surrounding structures, leading to spinal deformities such as scoliosis. This condition can complicate treatment options and necessitate a multidisciplinary approach for management.

When it comes to surgical intervention for scoliosis caused by neurofibromas, it is crucial to consult with specialists who have experience in both spinal surgery and neurofibromatosis. Typically, a team comprising orthopedic surgeons, neurosurgeons, and geneticists is ideal for managing such cases. These specialists can evaluate the extent of the spinal deformity, the impact of the neurofibroma on spinal structures, and the potential risks associated with surgery.

Regarding the question of whether neurofibromas can regrow after surgical removal, the answer is nuanced. While surgical excision can effectively alleviate symptoms and correct spinal deformities, neurofibromas have a tendency to recur, especially in patients with NF1. The likelihood of recurrence depends on various factors, including the size and location of the tumor, the completeness of the surgical resection, and the individual’s genetic predisposition. Regular follow-up with imaging studies is essential to monitor for any signs of regrowth.

For families seeking expert care, it is advisable to look for specialized centers that focus on neurofibromatosis and spinal deformities. Institutions affiliated with academic medical centers often have dedicated clinics for NF1, where a team of experts can provide comprehensive care. Additionally, organizations such as the Children’s Tumor Foundation offer resources and directories to help families find specialists experienced in treating neurofibromas and associated complications.

As a nursing professional, you may already be familiar with the importance of a thorough assessment and the need for a collaborative approach in managing complex conditions like scoliosis due to neurofibromas. It is essential to engage in open communication with the healthcare team, ensuring that all concerns are addressed and that your child receives the best possible care.

In summary, neurofibromas can significantly impact scoliosis treatment, necessitating a careful evaluation by a multidisciplinary team. While surgical intervention can provide relief and correct deformities, the potential for recurrence must be considered. Seeking care from specialized centers with expertise in neurofibromatosis will be beneficial for your child’s management. Regular follow-up and monitoring are crucial to ensure optimal outcomes and address any emerging concerns promptly.

Similar Q&A

Severe Scoliosis Caused by Neurofibromatosis: Treatment Options and Risks

Hello, my child is currently in the first year of junior high school and has had café-au-lait spots since birth. Recently, we discovered a severe scoliosis of 45 degrees. An MRI revealed that the cervical vertebra 7 and the area near the thoracic vertebrae have bone erosion due t...

Dr. Shi Guozheng reply Orthopedics
You can inquire at the pediatric orthopedic department of a medical center to see if National Taiwan University Hospital has experience in this area.

Understanding Neurofibromatosis: Treatment Options and Genetic Factors

Hello Doctor: My brother, when he was about 5 or 6 years old, developed small bumps on his skin that seem to grow larger with age. He also has some dark spots on his body, which were fewer when he was younger but have increased as he grew older. We consulted a doctor who diagnose...

Dr. Chen Sirong reply Oncology
Hello: Neurofibromatosis is a hereditary neurological disorder that can be clinically divided into two types, with Type 1 being more common. Statistically, there is one patient for every 4,000 newborns. Patients develop multiple tumors due to abnormal proliferation of their nerve...

Post-Surgery Work Considerations for Neurofibroma Patients

I would like to ask about my situation. I have a neurofibroma located at the level of my L3-L4 vertebrae. I have undergone surgery to remove it and have been resting for four months. I am currently working, and my job involves heavy lifting and standing for long periods (8-12 hou...

Dr. Chen Yongxue reply Orthopedics
According to the letter, the function of the nerves needs to be evaluated. The surgical approach and the method of spinal stabilization also require assessment. It is advisable to consult with the attending physician. Thank you.

Understanding Neurofibromas: Surgery, Risks, and Recovery Insights

Hello, I recently had an MRI that revealed a 0.75 cm tumor on my spinal nerve. Do I need surgery for this? Can it be determined whether it is malignant or benign? How large will the surgical incision be? Is there a risk of paralysis in the lower body or incontinence? How many day...

Dr. Qiu Yushu reply Neurosurgery
Hello: Spinal cord tumors generally require surgery, and microsurgery typically does not lead to lower limb paralysis or incontinence. The hospital stay is approximately 10 days. Dr. Yu-Shu Chiu.