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Vestibular Schwannoma - Not only NF2

Author: Lori Davila
Date: April 11, 2016


Index

  1. All People with VS
  2. The Difference
  3. Conclusion
  4. Citations

Neurofibromatosis Type 2 (NF2) is a rare Genetic, Neurological disease that causes tumor growth, primarily around the brain and spinal cord. The first of these tumors to be found, the tumors that grow faster than any others, are the ones that cause hearing loss and balance issues.

These tumors are called Vestibular Schwannoma (VS) since the tumors grow on the Vestibular Nerve and are Schwannoma tumors, these tumors are also sometimes referred to as they were initially names as Acoustic Neuroma (AN).

1. All People with VS

VS are not exclusively grown in people with NF2. Facts are that:

  1. A VS, is a rare benign tumor of the balance and hearing nerves. 95% of VS are Unilateral (occur on one side).
  2. If an acoustic tumor becomes large it may push on the surface of the brainstem but not really grow into brain tissue.
  3. Continued tumor growth that goes untreated may threaten neurological function and even life." Acoustic Neuroma Association (ANA) www.anausa.org

The ANA, also states "There is a growing body of evidence that sporadic defects in tumor suppressor genes may give rise to these tumors in some individuals. Other studies have hinted at exposure to loud noise on a consistent basis. One study has shown a relationship of Acoustic Neuromas to prior exposure to head and neck Radiation, and a concomitant history of having had a Parathyroid Adenoma (tumor found in proximity to the thyroid gland controlling calcium metabolism). There are even controversies on hand-held cell phones. It remains to be seen whether or not the Radiofrequency radiation has anything to do with Acoustic Neuroma formation. To date, no environmental factor (such as cell phones and diet) has been scientifically proven to cause these tumors. ANA does recommend that frequent cell phone users use a hands-free device to enable separation of the device from the head." (ANA)

Tumors that cause damage to any person are a situation to be concerned about finding immediate treatment for.

2. The Difference

But the differences in the cause of growth, requires different treatment methods. The common treatment for people with VS but without NF2 is Radiation or Radiotherapy. The reason on different complete treatment in this case is that NF2 VS grow bilaterally (on both sides).

The concern is that Radiation or Radiotherapy treatments are less likely to work long term in people with NF2 and can in fact cause more damage [Ohio Gathering, Dr. A.] and at least require a different dose than what is used for people without NF2. Some options include different Surgery methods or Clinical Trials to allow a person with NF2 to keep hearing longer and allow for planning of different hearing that few hospitals know enough about to even consider suggesting as a part of the method of helping, specifically the implants including the Choco ear Implant or Auditory Brainstem Implant.

3. Conclusion

There are several locations in the US that can treat NF2 properly and as more hospitals understand NF2 the number of hospitals for options will increase over time. (NF2 Treatment Locations)

4. Citations

  1. Acoustic Neuroma Association (ANA) www.anausa.org

  2. NF2 Ohio Gathering. (November 2015) NF2 Ohio Gathering: 10-10-15 http://nf2is.org/Ohio_Gathering2015.php

  3. Ashok R Asthagiri, MD. University of Virginia. https://uvahealth.com/findadoctor/profile/Ashok-R-Asthagiri