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While NF2 Information and Services - Recent News section shares new news articles a few times a week, there are older news topics that including basic explanations on different NF2 issues, some differences between NF1 and NF2 as well as other topics also worth looking at.

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  1. Forehead Wrinkling - BOTOX® (Botulinum toxin)

    Date Shared: August 29, 2017 | Source: WebMD | MedlinePlus

    BOTOX® (OnabotulinumtoxinA) also known as Botulinum Toxin Type A is a Botulinum toxin produced by Clostridium Botulinum Bacteria.

    Issue: Wrinkled Forehead Only on the side of No Paralysis

    Facial Paralysis results in an inability to show expression on the side of the face an individual has Facial Paralysis. Talk to your doctor.

    "Very serious problems can happen if the botulinum toxin spreads from where it was injected. It may cause dangerous issues like; swallowing or breathing problems. These problems can happen hours to weeks after the injection and can cause death. The risk is greatest in children who are being treated for muscle spasticity in their necks. But adults who already have swallowing or breathing problems are also at risk for problems from a Botox injection." [WebMD, BOTOX]

    Other reasons for possible swallowing issue include tumor growth on the; lower branch of Trigeminal Nerve (Cranial Nerve 5 the Mandibular branch), or 2) Vagus Nerve (Cranial Nerve 10). A tumor on the Vagus Nerve could also result in breathing issues.

  2. Tinnitus has a Purpose

    Date Shared: August 28, 2017 | Source: University of Illinois at Urbana-Champaign. | ScienceDaily.

    "Tinnitus, a chronic ringing or buzzing in the ears, has eluded medical treatment and scientific understanding. A new study found that chronic tinnitus is associated with changes in certain networks in the brain, and furthermore, those changes cause the brain to stay more at attention and less at rest. The finding provides patients with validation of their experiences and hope for future treatment options."

  3. THC (Cannabis products) and increased incidents of Comas and Seizures

    Date Shared: August 16, 2017 | Source: CNN

    High doses of THC in Cannabis products have been found to cause either a coma or induce seizures in children. Questions we should ask:

    • Could high levels of THC in the developing brain mean brains with a form of brain trauma?
    • Could healthy adults also be at risk with higher doses?
    • What are the chances of comas and seizures in individuals with brain tumors?

    There have been cases of Comas and Seizures seen in Emergency Rooms. Accidental consumption of Cannabis products by children has occurred. The children were not aware or did not know what they are eating. This is the reason edible versions are now required to include suggested limits in the United States, in Colorado.

    If you are using Cannabis for medicinal reasons, you may want to talk to your doctor about using CBD Hemp Oil which includes only trace amounts of THC and is non-psychoactive.

  4. Keep Moving - Help Mind and Body

    Date Shared: August 16, 2017 | Source: ScienceDaily, Society for Neuroscience

    If you have NF2, even if you can't walk well, keep moving - It may help your Body and Memory.

    In mice, Research Developments suggest, yet again, running and other forms of exercise, while the brain is young or in development, can help with improved memory later in life; this could also mean the brain while in the expansion, or a developmental Neuroplasticity stage that typically slows down after childhood.

    Individuals with NF2 often have a high Neuroplasticity rate, which can allow brain development to extend into adulthood as a result of; adaption of the brain to tumor growth, loss of senses (hearing/vision). Loss of hearing results in need to learn lip reading (speech reading), the adaption of the brain to hearing implants, or sign language. Later in life education of a new language can alone result in brain development.

    It seems likely the exercise may help the Neuroplasticity chances for recovery from memory issues tumors in another part of the brain could cause.

  5. Healing Damaged Cells: Tissue Nanotransfection (TNT)

    Date Shared: August 8, 2017

    Researchers at The Ohio State University (OSU) Wexner Medical Center and Ohio State's College of Engineering have developed a new technology, Tissue Nanotransfection (TNT). TNT can heal with a single touch, and even repair brain injuries, repair injured tissue or restore the function of aging tissue, including organs, blood vessels, and nerve cells.

    It can generate any cell type of interest for treatment within the patient's own body. TNT "injects genetic code into skin cells, turning those skin cells into other types of cells required for treating diseased conditions."

    Would this new technology help or hurt a person with NF2 who have missing tumor suppressor function, by instead resulting in tumor cell growth instead of healing damage?

    OSU has already started planning human trials to understand this better before it will be publicly available.

    Sources:
  6. BXCL101 (Bortezomib™)

    Date Shared: August 4, 2017

    Follow-up on the Tumor Drug Trial: BXCL101 (Bortezomib™) by BioXcel Therapeutics, Millennium Pharmaceuticals mentioned the at the end of 2016, for believed potential treatment of Schwannoma and Meningioma.

    Things you may want to know, side effects and more: https://www.nf2is.org/bxcl101.php

  7. Balance (Vestibular) Rehabilitation

    Date Shared: August 4, 2017

    People with Neurofibromatosis Type 2 (NF2) tend to develop balance issues as a result of:

    1. Growth of Vestibular Schwannomas (VS) also known as Acoustic Neuroma (AN)
    2. Loss of function of Vestibular Nerves and Vestibular System on one or both sides of the head

    Different things can be done to recover and compensate for balance loss. VS tumors and Vestibular damage are not always the result of the condition NF2. Regardless of the reason of the damage, this damage always requires Vestibular Rehabilitation Therapy (VRT), since VS damage from NF2 makes less than five percent (5%) of the population who develop these tumors, proper physical therapy for this should be easily accessible. Talk to your doctor.

    "Current evidence is in support of VRT for treating patients with a variety of vestibular disorders, both central and peripheral. High-level evidence studies support the use of treatment techniques of adaptation and substitution for gaze stabilization, habituation, balance and gait training, and can with repositioning maneuvers. Recent evidence has also examined and found promising results with technological innovations that are targeted at those with bilateral vestibular hypofunction and insufficient gains with a standard exercise-based program. Nevertheless, factors such as anxiety overlay/depression, time when beginning therapy, and adherence may have an impact on how a patient will do with his/her VRT program and should be acknowledged." [Burzynski, 2017]

  8. Brain Tumour presenting as Toothache and Trigeminal Neuralgia - Damage of Trigeminal Nerve (CN5)

    Date Shared: August 2, 2017

    For individuals with a Schwannoma tumor, brain nerve tumor, there could be more tumor masses than you know of, especially individuals diagnosed with Neurofibromatosis Type 2 (NF2). Because of this, tooth pain may not be a tooth issue but a Schwannoma issue.

    Mention tumors as a possible reason for the pain to your dentist before having a root canal or removing teeth, neither of which will stop the pain if it is Schwannoma on lower portion of Cranial Nerve 5 (CN V), on the Mandibular Nerve branch of the Trigeminal Nerve. Removal of teeth because of CN5 damage has occurred more than once.

    This was a case share by a Dental Team of this with pain but the result of Trigeminal Neuralgia pain from Trigeminal Nerve damage in a recent patent visit.

  9. Minimally Invasive Microsurgical Resection of Primary, Intradural Spinal Tumors is Feasible and Safe: A Consecutive Series of 83 Patients

    Date Shared: August 2, 2017 | Sources: Neurosurgery | DOI: 10.1093/neuros/nyx253

    To date, the traditional approach to intraspinal tumors has been open Laminectomy or Laminoplasty, a surgical procedure that removes one or more portions of the vertebral bone, followed by microsurgical tumor resection. Recently, however, the report simply notes the use of Minimally Invasive Surgical (MIS) approaches attempted by some doctors with good results.

    Ninety-three percent (93%) of patients were ambulatory and able to work at the time of follow-up.

    Tumor masses removed included; forty-nine (49) Schwannomas, eighteen (18) Meningiomas, ten (10) Ependymomas, two (2) Hemangioblastomas, one (1) Neurofibroma, one (1) Paraganglioma, one (1) Epidermoid Cyst, and one (1) Hemangiopericytoma.

  10. New MRI contrast Iron Oxide Nanoparticles: Research at Animal Phase

    Date Shared: August 2, 2017 | Sources: Science Daily | Nature Biomedical Engineering

    During an MRI/MRA test to enhance what the scans show an injection of a Gadolinium-based agent is necessary. There are known possible side effects of these agents that could range from mild discomfort during and for a few hours after the injection, but with repeated injections over time can result in kidney problems including possible Renal Failure (Kidney Failure).

    In 2016, researchers confirmed a new contrast agent of Iron Oxide Nanoparticles could potentially replace the Gadolinium-based agents for MRI/MRA contrasts. Recently related information of trials with Iron Oxide Nanoparticles in animals including; rabbits, dogs, and macaque monkeys have so far proven it is as safer than Gadolinium.

    It has also shown it can distinguish differences from; air, hemorrhage (Strokes), calcification, metal deposition, and blood clots, some of which required CT Scans with ionizing radiation, a scan type that alone could result in tumor growth.

    Kidney problems are also a possible result of drug-tumor treatments, making this an important development for individuals with tumors.


  11. Why some clothes could pose a safety hazard during MRI exams

    Date Shared: July 31, 2017

    Due to the magnets used for the imaging, facilities clearly state no metal is allowed to be on an individual walking into the room of an MRI. Some fabric includes silver or metal fibers, which might be seen on clothing labeled as Anti-Microbial.

  12. Artificial light from digital devices lessens sleep quality

    Date Shared: July 31, 2017 Source: ScienceDaily | Ophthalmic and Physiological Optics.

    Melatonin skyrockets when blue light is blocked.

    Blue light emitted from digital devices could contribute to the high prevalence of reported sleep dysfunction, suggests new research.

  13. Scientists Have Used CRISPR to Edit a Human Embryo in The US For The First Time

    Date Shared: July 28, 2017 Source: Futerism.

    Researchers in Portland, Oregon have, for the first time, edited a human embryo in the US.

    This work adds to the promise of CRISPR (gene editing), and it stands as an important step toward the birth of the first genetically modified humans.

  14. Birth Control Pills and Tumor Drug Treatments

    Date Shared: July 27, 2017 Source: Lori Davila | NF2 Information and Services.

    It is uncommon for Tumor Drug Treatments (an example would be Avastin™) to result in Early-Menopause (Premature Ovarian Failure (POF)). When taken only up to six months which is the duration of use for Cancers, and why most of the treatments note POF as unlikely, whereas Neurofibromatosis (NF) duration of treatment may be years.

    The six-month drug treatments commonly result in delayed or extended cycle intervals, but when taken longer can result in POF. It is wise to consider freezing eggs and starting birth control before starting a Tumor Drug Treatment if there is a chance you need to stay on the treatment over six (6) months as is the case with individuals with Neurofibromatosis (NF).

    While there is an argument, birth control may result in tumor growth, when on a Tumor Drug Treatment it can help regulate the menstrual cycle to lower risk of POF. Tests to monitor health included in the source.

    Talk to your doctors.

  15. Cancer-Causing Contaminants Found in Water

    Date Shared: July 27, 2017 Source: Patch Media.

    How safe is the water in your state? - Link included for listing state to state.

    While water comes out of your sink or shower may look clean, a new report released Wednesday might suggest otherwise. A report from the Environmental Working Group (EWG) tracked 93 contaminants across the state's fresh water supply, and found 11 harmful contaminants in drinking water.

  16. NEI charts a Clearer Future for Cataract Prevention and Treatment - Section: Eye Drops Work for Dogs

    Date Shared: July 26, 2017 Source: National Institute of Health. National Eye Institute.

    Cataracts is an issue for the general population after the age of sixty-five (65), but somewhere between sixty percent to eighty percent (60% - 80%) of individuals with NF2 develop Juvenal Cataracts at or shortly after birth.

    "Dogs may have a topical treatment for cataracts soon. "We just completed a clinical trial and found an eighty-five percent (85%) reduction in cataract formation in diabetic dogs," said Peter F. Kador, Ph.D., an NEI-funded researcher at the University of Nebraska Medical Center. Diabetes is a risk factor for cataract in both dogs and humans. The drug he developed prevents cataract formation by stopping a metabolic reaction in lens epithelial and fiber cells. Kador believes the drug may work in humans."

    NEI points to a treatment named Kinostat®, but there appears to there may be more than one eye drop and possible non-surgical option for Cataracts. Talk to your doctor.

  17. Calls to Poison Centers about Supplements up 50%, between 2002 - 2012

    Date Shared: July 26, 2017 Source: Victoria Knight | CNN, Journal of Medical Toxicology, National Poison Data System
    Dietary Supplements; Vitamins, Minerals, Herbs, Botanicals, Homeopathic Agents and Amino Acids
    Symptoms; Tachycardia (rapid heart rate), Vomiting, Nausea, Irritability, Drowsiness, and Dizziness.

    "From 2000 to 2012, there were 274,998 dietary supplement exposures reported to poison control centers across the US: one call every 24 minutes, on average. " This is an increased rate of 50% from previous years.

    While source focus is a concern for children, under the age of six (6), which accidentally consumed dietary supplements of parents, adverse side effects were also a reported issue with older children and adults.

    Dr. Henry Spiller comments on his report, "Because Supplements are not medicines prescribed by the doctor, people think of them as natural, but they need to be treated as if they were medicine. Because the FDA does not regulate dietary supplements, there are no robust studies done to ensure that they are efficacious or have a reliable safety profile. We're often going down a path of unknowns, and for possibly no benefit at all. We don't know if there's a benefit to taking any of these supplements, because of the lack of studies. People need to be aware of that."

    "Just because it's a natural supplement doesn't mean it's safe," he said. "I often use the example, technically, that cocaine is also natural. But that doesn't mean it's safe."

  18. Subacute normobaric oxygen and hyperbaric oxygen therapy in drowning, reversal of brain volume loss: a case report.

    Date Shared: July 24, 2017 Source: Dr. Harch, Paul G. | Medical Gas Research

    A two (2) year old girl drowned, resulting in deep gray matter injury. One-hundred percent (100%) oxygen treatment, or hyperbaric oxygen treatment (HBOT).

    DOI: 10.4103/2045-9912.208521
  19. NF2 Ohio Gathering (OG) 2016 - Transcripts

    Date Shared: July 20, 2017 | Event Date: October 8, 2016 | Source: Phyllis Lee, NF2 Event

    The October 2016 NF2 Ohio Gathering Transcripts include important topics is available in full at https://www.nf2is.org/og2016-3sections.php. There are jump points to the three (3) sections for help finding sections given the length of the document.


  20. Novel cancer treatment wins endorsement of FDA advisers

    Date: July 13, 2017 | Source: The Washington Post

    As of Wednesday, July 12, the Food and Drug Administration (FDA) advisers have started to encourage a first-of-its-kind cancer treatment for B-cell Acute Lymphoblastic Leukemia with Immunotherapy. This immunotherapy treatment uses patients' immune cells to fight the disease if other treatments have failed or relapsed in children or young adults between the ages of three (3) to twenty-five (25).

    If cleared by the FDA, it would be the first gene therapy approved in the United States.

  21. New research offers hope to neuro-tumor patients - Overproduction of PrPC

    Date: July 10, 2017 | Source: EurekaAlert!

    Overproduction of PrPC in NF2-related tumors, Mesothelioma (usually linked to exposure to asbestos), Breast Cancer, Colorectal Carcinoma, Melanoma, Glioblastoma, Prostate Cancer, Gstric Cancer, and Spontaneous Schwannomas.

  22. ABI and American Med-El Trial in the United States

    Date Shared: June30, 2017 | Written: June 2016 | Source: University of Kansas

    American Approved Audtotry Brainstem Implants (ABI) and FDA approved brands.

  23. Fact: Seizures / Epilepsy and Driving Limits and Options

    Date Shared: June 27, 2017

    Epilepsy and driving is a personal and safety issue. A person with a seizure disorder that causes lapses in consciousness may be putting the public at risk from their operation of a motor vehicle. Laws have been enacted all over the world regarding driving for people with epilepsy.

    In every state in the United States, it is illegal to drive for an individual having seizures, and duration of last seizure incident may allow the ability to drive again, six months to two years depending on the state.

    However, town accessibility options of personal bus services, deductions of cost for; public bus, train or subways can help allow for accessibility options. Contact your local town hall for options and additional information.

    The same transportation options apply to individuals who are legally blind or deaf.

    Individuals with NF2 may only have issues with Epilepsy for a few two to five years.

  24. Opioid-Induced Hyperalgesia (OIH) - Painkillers sometimes make the pain worse

    Date Shared: June 27, 2017 | Source: American Association for the Advancement of Science (AAAS)

    You might want to tell your doctors you need alternative painkillers to Opiates, particularly if the already prescribed Opiates are not killing pain despite increases in dose.

    "At high doses, Opioid Painkillers actually seem to amplify pain by changing signaling in the central nervous system, making the body generally more sensitive to painful stimuli."

  25. Acupuncture Shown to Ease Pain in ER Patients

    Date Shared: June 22, 2017 | Source: PsychCentral

    A new study has found that the use of acupuncture in emergency departments is a safe and effective alternative to pain-relieving drugs for some patients.

  26. Gene Editing: Crispr-Cas9

    Date Shared: June 19, 2017 | Source: New York Times
  27. Sulforaphane reduces hepatic glucose production and improves glucose control in patients with type 2 diabetes

    Date Shared: June 18, 2017 | Source: Science. American Association for the Advancement of Science.

    Also read about NF2 and Sulforaphane for Vestibular Schwannoma (VS) / on NF2 Information and Services Drug-Trial listing.

  28. Cancer in the organ donor

    Date Shared: June 16, 2017 | Source: Dpt. of Abdominal Surgery & Transplantation

    "Tumors in the donor: what is the risk? Cancer can be transmiRed by organ transplantation"

    We need to ask what could this mean for people with NF who are considering listing themselves as organ or blood doners.

  29. New tool helps pick puppies most suited to guide dog training

    Date Shared: June 16, 2017

    Puppy Training Supervisor Questionnaire (PTSQ) is a new method to help successfully select puppies that would make good guide dogs.

  30. Pembrolizumab (Keytruda)

    Date Shared: June 15, 2017

    Additional sources and information about Pembrolizumab hera on NF2 Information and Services. Includes a list of conditions Pembrolizumab is in trial for.

  31. Pembrolizumab (Keytruda) a PD-1 blocker

    Date Shared: June 11, 2017 | Source: New York Times

    With the release of a new tumor drug treatment Pembrolizumab (Keytruda) quickly passed by the FDA for some Cancers; cancer of the pancreas, prostate, uterus, or bone and currently in trial for Neurofibromatosis Type 1.

    • Could this treatment potentially also help people with NF2 or other tumor conditions?
    • Is this a breakthrough in what could be a new line of tumor drug treatment possibilities for all other tumor conditions?
  32. Antibody Targeted Therapies in Meningiomas: A Critical Review

    Date Shared: June 9, 2017

    "Surgical resection being the most successful approach for meningomas is not always possible pertaining to its inapproachable locations of tumors. Radiation therapy is sometimes restricted by neurotoxicity and tumor size, while chemotherapy regimens have been minimally effective as treatment option in meningiomas. Therefore, treatment of the remaining subset of aggressive, unapproachable or refractory meningiomas remains challenging. This makes it a topic of concern to explore more strategies for its management."

    "Recent practices have shown increased interests in the utilization if monoclonal antibodies. Among the most prospective are TRAIL therapy followed by antibodies targeting receptors such as PDGFR, EDGF, VEGFR, PD-1. These therapies can be utilized to reduce the stability of meningiomas. There is a need for initiation of large scale Randomized controlled trials to improve outcomes in meningioma patients and formation of a more productive management strategy. "

  33. FDA seeks removal of opioid painkiller from the market

    Date Shared: June 9, 2017

    "The Food and Drug Administration on Thursday asked a drug company to remove its opioid pain medication from the market, the first time the agency has made such a request because of the public health consequences of abuse."

    "The agency concluded after an extensive review of Endo Pharmaceuticals' Opana ER that the "benefits of the drug may no longer outweigh its risks." The company reformulated the drug in 2012 to make it more difficult to snort, but the FDA said that move actually led to more injections - and a major HIV outbreak."

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