Recent News

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.

  1. Meditation and Biofeedback/Neurofeedback
    Date: February 24, 2017

    Stress can make a small issue seem worse.

    A minute or two of time alone can help reduce stress and help with issues of; 1) inability to Sleep despite Insomnia, 2) Headaches (including Migraines), 3) Tinnitus, 4) Blood Pressure, 5) Improve Circulation, 6) Anxiety and 7) issues for ADHD.

    Method to do this explained in the link.

  2. Sulforaphane Vegetables and Tumors
    Date: February 15, 2017

    Included is a reason you may want to eat; Broccoli, Broccoli Sprouts, Brussels Sprouts, Cabbage, Cauliflower, Savoy Cabbage, Red Cabbage, Kale, and Horseradish if you have Vestibular Schwannoma or Schwannoma in other regions of your body.

  3. Cigarettes and NF
    Date: February 10, 2017

    Tumors, Immune System, and Additional Risks

    Neurofibromatosis (NF); (NF Type 1, NF Type 2, and NF Type 3, also known as Schwannomatosis) Cancer, or not Cancer, and why papers that note things that might make result in more harm to people with Cancers may also be dangerous to people with NF.

  4. Antioxidants
    Date: February 10, 2017

    Possible "Healthy" Food Issue

    Some foods are said to be better than others for tumor prevention, but what this may mean when we are prone to tumors or have tumors already may be another matter as explained in a link from the National Cancer Institute about Antioxidants. But did the mice only have an issue because of the concentrated amount? Unknown

    In 2010, it was known people who are not Cancer prone react differently to foods than those who are looking to prevent tumor or Cancers. The only debate is which foods other than antioxidants this may apply to.

  5. Healthcare Plan
    Date: February 7, 2017

    3 legal focuments to be ware of prior to first major medical treatment. Make certain in advance what you want is decided by you, not automatically by the medical system.

    Important paperwork to file for, with a legal aid. It is best with a legal aid of some sort as the documentation needed for these can be changed yearly.

    1. Living Will
    2. Healthcare Proxy
    3. Power of Attorney

  6. Nerve Cell Damage from Schwannoma
    Date: February 2, 2017

    Schwannoma tumors are an overgrowth of Schwann Cells. Schwann Cells are a part of Nerve Cells for communication of senses and for impulse for movement of the body.

  7. Hearing Implant Sound Processors
    Date: January 24, 2017
    • Cochlear Ltd: Nucleus 6
    • MED-EL: OPUS 2
    • Advanced Bionics

  8. Medication Tips: Over the Counter and Prescription
    Date: January 23, 2017

    Over the Counter medications should be taken as seriously as Prescription medications. Ideally, before purchase of any medication, be aware of side effects, but even then, following the steps below is important. Each time a pill is taken unless taken daily, it is best to take the following precautions: Step 1...

  9. Decaffeinated Coffee
    Date: January 3, 2017

    Things you should know if you drink or plan to drink Decaffeinated Coffee and are concerned about Cancers, Gastric Acidity, Iron Deficiency and Arthritis.

  10. Tylenol Dose Warning
    Date: January 3, 2017

    Question: How safe is Tylenol (Acetaminophen)?

    Answer: Not as safe as you may think.

  11. NF2 Story: Jennifer Vanier Monusko
    Date: December 30, 2016

    Jennifer Vanier Monusko, born with NF2, shares her story of December 29, 2009

  12. Cranial Nerve 8 and Vestibular Schwannoma
    Date: May 12, 2016

    The Cranial Nerve 8, the Vestibulocochlear Nerves starts at the center of the brain and splits to become the balance nerve and the hearing nerve, Vestibular Schwannoma, also known as Acoustic Neuroma grown on, and between these two nerves.

    A battle everyone born with NF2 will face, some earlier than others, is Bilateral Vestibular Schwannoma. NF2 typically also results in other tumors in the - brain, spinal cord and potentially other parts of the body, but Bilateral VS is the only issue consistent to everyone with NF2.

  13. The Cost of NF
    Date: May 6, 2016

    Three forms of Neurofibromatosis (NF): NF Type 1 (NF1), NF Type 2 (NF2) and Schwannomatosis (SWN) are very different, but they all result in the growth of slow growing but still painful, dangerous, potentially life threatening tumors. There is no treatment to permanently; stop, shrink and prevent more NF tumors from growing, but all NF tumors do not require treatment.

    The constant need to see doctors, purchase medications, have different medical test and treatments are a financial burden that results in issues that increases the risk of the dangerous, life threatening health issues, when not lowering the quality of life due to financial limitations.

    Read more to understand; the unfortunate aspects of NF, why a cure for each NF type is needed and why it is to the advantage of many other than people with NF to find a cure.

  14. Neurofibromatosis Tumors
    Date: May 4, 2016

    Neurofibromatosis (NF), which is a combination of three genetic diseases; NF1, NF2 and Schwannomatosis all result in the slow growth of typically Benign, non-Cancerous tumors, that can start to grow typically at birth, even if none are symptomatic till years later. While each type of NF results in...

  15. NF Criteria: NF1, NF2 and Schwannomatosis
    Date: May 2, 2016

    The three forms of Neurofibromatosis are; NF1, NF2 and Schwannomatosis. The criteria for a diagnosis of each form of NF are included here and should be known by anyone with any form of NF.

    It is important to understand that while NF is rare, it is statistically unlikely to have more than one form of NF. It is also statistically likely for a person with any of the three forms to be told they might have more than one form of NF. Since tumor growth for each is different it is important to know for a fact which form a person has. Due to similarities between the three forms, the accidental diagnosis of more than one form of NF is an easy one for doctors to make.

  16. NF Genetics Inheritance
    Date: May 3, 2016

    Neurofibromatosis (NF): NF1, NF2 and Schwannomatosis, are a genetic Autosomal Dominant conditions, which means each child a parent with NF1, NF2 or Schwannomatosis male or female has a 50% chance to born with the form of NF their parent has.

  17. NF Criteria: NF1, NF2 and Schwannomatosis
    Date: May 2, 2016

    The three forms of Neurofibromatosis are; NF1, NF2 and Schwannomatosis. The criteria for a diagnosis of each form of NF are included here and should be known by anyone with any form of NF.

    It is important to understand that while NF is rare, it is statistically unlikely to have more than one form of NF. It is also statistically likely for a person with any of the three forms to be told they might have more than one form of NF. Since tumor growth for each is different it is important to know for a fact which form a person has. Due to similarities between the three forms, the accidental diagnosis of more than one form of NF is an easy one for doctors to make.

  18. Science Timelines
    Date: May 1, 2016

    Neurofibromatosis (NF), initially called Von Recklinghausen disease, is not one but three separate genetic conditions that all result in the growth of tumors and neurological issues. The three diseases are called; Neurofibromatosis Type 1 (NF1), Neurofibromatosis Type 2 (NF2) and Schwannomatosis.

    The history of NF is complicated and the development of genetic testing was needed for researchers to realize that there are in fact three forms, but this fact is not even commonly known today by all doctors since NF is rare and in some cases not even identified at all. The results are a common issue of inaccurate diagnosis of the wrong NF form and individuals not receiving the proper testing for treatments needed.

  19. Neurofibromatosis Awareness Month
    Date: April 30, 2016

    Reminder: May is Neurofibromatosis Awareness month. The attached link includes some facts that can be shared with others.

  20. Clinical Trial Misconceptions
    Date: April 18, 2016

    There are a few misconceptions to Neurofibromatosis Type 2 (NF2) Clinical Trials that everyone with NF2 should know; 1) they are not Chemotherapy, 2) that are Tumor Target Treatments, 3) they are not guaranteed to work, 4) there is more than one and 5) side effects of not are still potentially helpful.

  21. Meditation
    Date: April 15, 2016

    Meditating has been proven to do many things including increasing their ability to think, control anxiety and can be included in life to help with overall health.

  22. Vestibular Schwannoma - Not only NF2
    Date: April 11, 2016

    Vestibular Schwannoma are not exclusively to NF2, the concern of not just Single Sided Deafness but Deafness in Both Ears means different treatment methods should at least be possible to be done by the doctor.

  23. Tumor Hearing Treatments
    Date: April 4, 2016

    Dr. Asthagiri shared the success rates between Radiosurgery and Surgery. Radiation treatments of any kind result in side effects just as easily as Surgery, one difference is most Radiation side effects are not issues till well after treatment. Surgical options do not always include hearing loss, but depend on the tumor and Surgical Approach.

  24. NYU Langone NF Education: 11-15-15 NF1 & NF2: History and Diagnostic Procedures
    Date: March 31, 2016 - Part 1

    In the NYU NF Education 2015 event shared here, medical speakers of the NYU NF (Neurofibromatosis) Clinic discuss the history of NF1 and NF2, how they help patients as a complete multidisciplinary team and facts about different simple medical tests that can be an advantage to anyone with NF regardless of location of treatment.

  25. NYU Langone NF Education: 11-15-15 - Part 2 Thomas Roland, M.D.:Hearing Preservation & Hearing Loss Options
    Date: March 30, 2016

    In the 2015 NF Education event at NYU Langone Medical Center, Dr. Thomas Roland, who is the Chairman of the Department of Otolaryngology, ENT, CI and ABI hearing implant surgeon, explains some hearing loss options including delay options to keep hearing longer, implants and the importance of watch and wait.

  26. NF2 Ohio Gathering: 10-10-15
    Date: March 22, 2016

    The 2015 NF2 Ohio Gathering invited doctors to speak about NF2 with key speaker Dr. Asthagiri previously from the NF2 NIH study, now at the University of Virginia. Some of the topics included; 1. tumor issues including but not limited to 2. the difference of NF2 Vestibular Schwannomas and non-NF2 Vestibular Schwannomas biologically as well as in terms of reactions to treatments, 3. why clinical trials to date are limited, 4. Hearing Implant options, and 5. Vestibular Rehabilitation for balance issues.

  27. Free Interpreter Service by Law in American Hospitals
    Date: March 18, 2016

    Fortunately the ADA and the Department of Justice, Americans with Disabilities Act of 1990, interpreter use during all hospital related visits is legally required and is not a cost to the patient. This includes some of the options explained here.

  28. Live a Long Life with NF2
    Date: March 16, 2016

    As many people with NF2 know, constant tumor development somehow can cause a short term lifespan, but many of the actual reasons for this can be prevented if understood.

  29. Recovery to Heal and Minimize Pain
    Date: March 10, 2016

    The number of tumors a person with NF2 might develop in their life varies from person to. The number of tumors determines the number of treatments an individual might need. It is therefore important to know how to recover between treatments and to delay damage from tumor cell growth. These options include...

  30. NF2 Facts and Recent News
    Date: March 09, 2016

    The NF2 Information and Services website contains a great deal of information about: Information and Services, NF2 News and Relevant Medical Updates. Once the organization raises enough in donations for free distribution of NF2 print material, we hope our newer news section will help with recent advancements to help people even more.

  31. IV Drain for CSF Leak
    Date: March 07, 2016

    This article explains how a Craniotomy method was done to remove some NF2 tumors and explains how an IV drain was put in place to drain the Cerebrospinal-Fluid (CSF), to prevent a CSF leak following surgery.

  32. Tinnitus - Hearing Loss Issue: Not Just an NF2 Issue
    Date: October 23, 2015

    Tinnitus is a phantom sound people start to hear when hearing loss develops. This is a problem for older people, people with different health conditions and many medications commonly taken, sounds heard might be:

  33. Cancer-killing Stem Cells
    Date: October 14, 2014

    New research of genetically engineered stem cells for Brain Cancer that kill tumor cells but nothing else.

  34. 3D Printed Science and Medical Items
    Date: October 14, 2014

    3D printing is the creation of items with a machine that melts plastic in layers. Some of the items of interesting notice at the 2014 New York - Makers Faire were science and medical in nature.

  35. Nanoparticle Dry Eye Treatment
    Date: October 13, 2014

    Development of a clinical trial of a dry eye treatment, that will not just coat the eye, but bind to the eye itself.

  36. Why some clothes could pose a safety hazard during MRI exams
    Date: September 9, 2014

    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.

  37. NF2 and NF1 - False Combination Diagnosis
    Date: August 27, 2014

    NF1 treatments are different from NF2 treatments proper diagnosis is important.

  38. Bacteria and Tumor Death
    Date: August 19, 2014

    In an article seen at Genetic Engineering & Biotechnology News, called "Shrinking Tumors with Injections of Engineered Bacteria" in April 2014, bacteria use to destroy tumor cells was the topic in review.

  39. Tumors and the Immune System
    Date: August 11, 2014

    The importance of vitamins and food management which can help raise the immune system.

  40. NF2 Cure - Still Waiting
    Date: July 31, 2014

    For anyone who is looking for something that will; definitely stop, definitely shrink, definitely prevent the creation of more tumors in a person with NF2 who has VS or other tumor forms and locations, there is none. There are however options to potentially help slow tumor progression down.

  41. Audiovestibular Morbidity
    Date: June 13, 2014 Source: National Institute of Health Information: Hearing Loss Prevention

    Data reviewed to determine complete hearing loss for individuals with NF2 as a result of:

    • dramatically different Schwannomas tumor sizes along the Vestibulocochlear Nerve (CN8), these tumors are more commonly known as Vestibular Schwannoma but referred to in the report as Cochleovestibular Schwannomas (CSV)
    • when no tumor is even seen
    • or why hearing loss progression can be either sudden, gradual or can be lost and returned before finally complete loss
    • an attempt to understand why Avastin helped some individuals and not others

  42. Bioelectronics Over Drugs
    Date: May 23, 2014 Source: New York Times Information: Pain Management

    In a study on rats, it was concluded that the nervous system is like a computer terminal through which you can deliver commands to stop a problem, like acute inflammation, before it starts, or repair a body after it gets sick. "All the information is coming and going as electrical signals."

  43. Pregnancy after Chemotherapy Agents
    Date: May 20, 2014 Source: PubMed Information: Nerve Damage

    Today research is finally proving that children with health issues parents did not have are the result of different things a mother is exposed to prior and during pregnancy, especially with chemotherapies.

  44. Vitamin B12 - Aid in Neuropathy Prevention and Recovery
    Date: April 16, 2014 Source: NF2 Information and Services Information: Nerve Damage

    Vitamin B12 is important in the formation of all cells in the body, especially red blood cells and the covering of nerve cells (myelin). The body needs myelin for nerves to function properly.

  45. Other Optic Abnormalities
    Date: April 4, 2014 Source: NF2 Information and Services Information: Optometry

    NF2 results in Juvenile Cataracts and Other Optic Abnormalities. Some of those other eye issues are explained here.

  46. Cancer Treatment Revolution
    Date: March 25, 2014 Source: ScienceDaily Information: Chemotherapy

    Cancer treatment revolution potential with new drug explains expectations of a new medication in development that can attack Cancer Cells in multiple ways and result in fewer side effects.

  47. What are Cognitive Abilities and Skills, and How to Boost Them?
    Date: March 21, 2014 Source: SharpBrains Information: Brain Function

    Cognitive Brain Development is an issue with different brain tumor management treatments.

  48. Why Is Dark Chocolate Good for You? Thank Your Microbes
    Date: Mar 20, 2014 Source: Scientific American Treatment: Anti-inflammatory

    Improving Health with Dark Chocolate consumption Dark Chocolate is 75% Cocoa Powder. "New research suggests that beneficial bacteria that reside toward the end of our digestive tract ferment both the antioxidants and the fiber in cocoa."

  49. Shift workers beware: Sleep loss may cause brain damage, new research says
    Date: Mar 19, 2014 Source: CNN Information: Brain Function

    New Research: Sleep loss may cause brain damage

  50. Vestibular Rehabilitation Therapy (VRT) - WHAT IS VESTIBULAR REHABILITATION THERAPY?
    Date: Mar 19, 2014 Source: CNN Information: Balance Rehabilitation

    Vestibular Schwannoma physical therapy.

  51. Tumor banking, in hopes of future cure
    Date: Mar 17, 2014 Source: MSN Information: Planning Ahead

    Be it chemotherapy or gene therapy, saving tumors after surgery may eventually be helpful in your own treatment needs.

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