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Unanswered NF2 Questions

Since NF2 was declared as a different genetic condition from NF1, there have been many medical advances. There is still no cure for NF2, however, researchers, doctors and the NF2 community all have questions.


  1. Nerve Repair:
    a) Will stem cells ever be helpful in nerve regrowth treatments for NF2? Why or Why not?
    b) What is being done on cranial nerve repair and regeneration, particularly the cochlear and facial nerves?

  2. Surgery Techniques:
    Have there been any new, less debilitating surgery techniques developed and if so are they in use?

  3. Radiation Therapy:
    a) If a brain tumor is treated with SRS (Stereotactic Radiosurgery), for an oversized tumor that needs a large dose of radiation, how far away could another tumor possibly grow? Could it be only in the immediate area around the tumor or as far potentially as the other side of the head or neck?
    b) The last few symposiums, conferences and webinars have said they really are moving away from radiation treatments because evidence is saying it is not effective or could make the a situation it worse. But people are saying their doctors are still recommending it.

  4. Tumor Management:
    a) Will Avastin ever make it past Clinical Trial? Why or why not?
    b) How are the following treatments doing in trials?
    1. Bevacizumab (Avastin™)
    2. RAD 001 - Everolimus (Afinitor™)
    3. Lapatinib (Tykerb™)
    4. OSU-HDAC42 - AR-42
    5. Nilotinib (Tasigna™)
    6. Sorafenib (Nexavar™)
    7. Erlotinib (Tarceva™)
    8. Sunitinib (Sutent™)
    9. Selumetinib - AZD6244
    10. SOX 10
    c) Have these possible treatments made it to NF2 trials and at what phases?
    1. Aspirin
    2. FRAX97
    3. Imatinib (Gleevec™)
    4. Ado-Trastuzumab Emtansine
    5. Cetuximab (Erbitux™)
    6. Sirolimus (Fermentek™)
    7. BEZ-235 aka NVP-BEZ235
    8. Dasatinib (Sprycel™)
    9. Vandetanib (Zactima™
      and Caprelsa™)
    10. Somatostatin
    d) Are there any medications being reviewed by researchers, at any stage, that look to be toxic to tumors to potentially indefinitely prevent tumors from growing after treatment is completed for either Schwannoma or Meningioma?

  5. Ionizing Radiation effects:
    a) Are children in a growth spurt phases more prone of damaging ionizing radiation effects from medical treatments, not including cognitive issues, but in terms of other tumor growth or potential risk of Malignancy?
    b) Between what years for higher risks if there are any and up to what age for interfering with brain development for cognitive issues?

  6. Cancer:
    Mesothelioma and Breast Cancer are mentioned in different NF2 papers, is the connection between either Cancer for and NF2?

  7. Neuropathy Prevention:
    a) Are there any theories or conclusions on the reasons for axomal signaling damage that results in neuropathy?
    b) Is overuse (overstimulation) or under use of the nerve prevent neuropathy development? ie. - would more or less movement help

  8. Neurostimulation Devices:
    a) Neurostimulation Devices for Neuropathy, should not be used in people with ABI or CI, but if the hearing implant is no longer in use by patient is there danger in use of these Nuerostimulation devices?
    b) Does this apply to only implanted Neurostimulation Devices, can External Face Stimulation damage an ABI or CI, or are external devices only safe for hearing implants when they are used only a certain distance away or with low powered?

  9. Nerve Pain Medication:
    a) For pain from neuropathy, some people are suggested to take pain killers like aspirin and others are being given prescriptions of codeine or morphine to take daily. These strong pain killers cause other issues, are these right classification of medications to be taking?
    b) Why do antidepressants help with people who have pain from neuropathy and should all people with NF2 neuropathy signs, be suggested to use one or Neurontin (Gabapentin), Cymbalta (duloxetine hydrocholride) or Lyrica (pregabalin)?
    c) What are the opinions of medical marijuana for pain and possibly stepped in tumor growth?
    d) Which doctors should be prescribing these for us; Neurologist or General Practitioner?

  10. Breast Feeding:
    Is it bad to breast feed our children if we have NF2? Does breast feed affect only mom, or does it affect the baby as well? Is the answer different depending on it the child has NF2 or not? Does it just make it harder to nurse?

  11. Tumor Change and Pregnancy:
    Does change in blood flow, like pregnancy, effect only Meningioma or other tumor types as well??

  12. Preferential Motor Reinnervation (PMR). Regenerating axon in the Peripheral Nervous System (PNS).