What are the risks of surgery for acoustic neuromas in NF2?

Question

Hello doctor,

I was diagnosed with neurofibromatosis type 2 and have bilateral acoustic neuromas. My hearing is getting worse, and now I am experiencing some balance problems too. I was told surgery carries a high risk of deafness, but is there any targeted therapy, like Bevacizumab or others, that can help shrink the tumors? Also, is genetic counseling important for my kids? I am scared I will lose all hearing soon.

Kindly help.

Answer 1

Hello,

Welcome to icliniq.com.

I can understand your concern.

Neurofibromatosis type 2 (NF2) is a condition that causes tumors to grow on the nerves that control hearing and balance. These tumors are called acoustic neuromas. This explains why your hearing is getting worse and why you are experiencing balance problems. When it comes to treatment, surgery can remove the tumors, but it carries a risk of hearing loss because the tumors affect the hearing nerves, making it a difficult decision.

Bevacizumab (Avastin) is sometimes used to shrink the tumors or slow their growth. While it does not cure NF2, it can help maintain your hearing or prevent it from worsening. You should ask your doctor if this might be a suitable option for you. Radiation is also an option, and it can sometimes stop the tumors from growing, particularly if they are small.

As for genetic counseling, it is a good idea. Since NF2 is passed down through families, your children could also be at risk. A genetic counselor can help you understand the likelihood of this and guide you on whether your children should get tested.

You are not alone in this, and treatments are available to help you manage the condition and protect your hearing as much as possible. Be sure to talk to your doctor about all the options that might be right for you.

I hope this helps.

Thank you.