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.
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.
"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."
High doses of THC in Cannabis products have been found to cause either a coma or induce seizures in children. Questions we should ask:
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.
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.
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:
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
People with Neurofibromatosis Type 2 (NF2) tend to develop balance issues as a result of:
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]
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.
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.
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.
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.
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.
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.
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.
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.
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.
"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."
A two (2) year old girl drowned, resulting in deep gray matter injury. One-hundred percent (100%) oxygen treatment, or hyperbaric oxygen treatment (HBOT).
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.
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.
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.
American Approved Audtotry Brainstem Implants (ABI) and FDA approved brands.
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.
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."
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.
Also read about NF2 and Sulforaphane for Vestibular Schwannoma (VS) / on NF2 Information and Services Drug-Trial listing.
"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.
Puppy Training Supervisor Questionnaire (PTSQ) is a new method to help successfully select puppies that would make good guide dogs.
Additional sources and information about Pembrolizumab hera on NF2 Information and Services. Includes a list of conditions Pembrolizumab is in trial for.
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.
"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. "
"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."