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NF2IS - Move It Move It

Last Updated: 05/17/18

NF2 - Move It Move It

Vestibular Recovery Balance Tips

Date: May 16, 2018

1. Avoiding Medications (Ototoxic) - Strong Prescription Pain Killers

When attempting recovery of balance after vestibular system damage or failure, avoid or discontinue taking prescription strength pain killers as soon as possible. Tylenol #3, Percocet, and Codeine include side effects of lightheaded and dizzy; which makes it difficult to recover from vestibular nerve damage.

2. Visual Cues and Lighting

Vision for visual cues are necessary for walking stability following vestibular nerve damage. Since vision is needed for stability, it is common to have problems walking at night or in other low or no light situations.

Visual cue examples: 1) Look at a fixed point in the distance to walk towards. 2) Do not look down at your feet on the ground even if vision is blurry. 3) Looking at a streetlight, sign, or other object ahead of you. 4) Look at a picture on a wall. 5) Look ahead at the end of the aisle at the grocery store. 6) look at the face of the person you are walking to meet.

3. Core and Leg Muscles

Poor balance quickly results in less overall movement that can result in no muscle strength which will make it difficult to walk again. Find exercise options that can be done; 1) in a seated position, 2) standing with some sort of support like a wall or chair, or 3) while lying down.

4. Flat Floor

Medication, visual cues and muscle strength will help when walking on flat and even surfaces, but the practice of walking backward or on uneven terrain (like grass) can help with fall prevention. - Methods to build balance should not be done while alone.

5. Posture

Remember to stand with your back straight, chest out, and head up looking forward as far as possible. Vestibular system issues cause an automatic response that include slouched shoulders and hands held forward to grasp something for stability: if continued, these balance compensation attempts will cause spine issues.

6. Be Prepared - Know Yourself

Speak to either a physical therapist, about the best shoes to wear for better balance. Learn how to use a cane for stability, or consider a balance service dog.

Reason to Walk #1: Balance and Muscle Weakness

Date: May 4, 2018

Balance and muscle weakness are serious issues for people with the condition Neurofibromatosis Type 2 (NF2).

NF2 health issues left untreated can result in unexpected problems, like delay in walking after equilibrium issues, and poor immune systems. But, following different treatments like surgery, immediate recovery is necessary if an individual is considering a clinical trial, tumor-drug treatment all of which hinder any wound healing and chance of complete recovery from surgery.

Prolonged lack of recovery following does not only leave an individual with muscle weakness and an inability to walk but could hurt the heart as per the recommendations of movement needed daily by the American Heart Association, and risk circulation for memory.

Possible reasons individuals with NF2 have issues walking and muscle weakness:

  1. Bilateral Vestibularopothy. Vestibular Nerve damage, tumor damage along Cranial Nerve 8 (CN8) Bilateral Vestibular Schwannoma (VS)/Acoustic Neuroma (AN)
  2. Spinal Cord Tumors.
  3. Leg Tumors.
  4. Severe Fatigue. Fatigue from tumor growth, tumor-drug trial treatments, medications, or other treatments
  5. Frequent Seizure Incidents.
  6. Following a Stroke.
  7. Trauma Brain Injury. Pressure or trauma in an area that controls movement.
  8. Atrophy, from extended periods of lack of movement, common issue during recovery of different treatments.
  9. Peripheral Neuropathy/Nerve Degeneration.

Reason to Walk #2: Poor Balance (Disequilibrium) and Vestibular Rehabilitation Therapy

Date: April 21, 2018

Help Yourself if in need of Balance Recovery or Building Muscle Mass, or taking a Tumor-Drug Treatent

People with Neurofibromatosis Type 2 (NF2) develop walking issues for many reasons.

Most often the walking issue starts as a result of imbalance from tumor growth that results in vestibular nerve damage, which is a branch of cranial nerve 8 that runs from the brainstem to the vestibular system for which provides the inner ear for balance.

The growth of a schwannoma tumor on the vestibular nerve, vestibular schwannomas (VS)/acoustic neuroma (AN) , will result in an individual facing single-sided vestibular system damage and will be the start of equilibrium issues, disequilibrium/vestibulopathy. Single-sided vestibulopathy is vestibular system damage on one side of the head. It results in imbalance issues that an individual can recover from in a few days or a few months.

Bilateral vestibulopathy is vestibular system damage to the nerve on both sides of the head. "The symptoms typically include imbalance and visual disturbance. The imbalance is worse in the dark or in situations where footing is uncertain while spinning vertigo is unusual. The visual symptoms referred to as "oscillopsia," only occur when the head is moving (J.C., 1952)."[1] Bilateral vestibulopathy results in complete loss of the part of the body that distinguishes motion. With time, a section of the brain will help with adaption to motion, but vestibular rehabilitation therapy (VRT) is necessary.

Without VRT it is easy to develop muscle weakness and over time potentially result in an inability to walk at all.

Reason to Walk #3: Too much sitting - The Brain and Memory

Date: April 16, 2018

Do you have problems with memory? How many hours a day do you sit without walking, moving, or standing? "researchers have found that in people middle-aged and older, a brain structure that is key to learning and memory is plumpest in those who spend the most time standing up and moving."[1]

"The findings are based on interviews and tests of 35 cognitively healthy people between the ages of 45 and 75. Researchers at UCLA's Semel Institute and its Center for Cognitive Neuroscience queried the volunteers about their physical activity patterns and scanned their brains in an MRI. Then they gauged how self-reported sitting time or physical activity levels corresponded to a thickness in these critical brain structures."[1]

"The study subjects reported average sitting times of three to 15 hours a day. After adjusting for their subjects' ages, the researchers found that every additional hour of average daily sitting was associated with a 2% decrease in the thickness of the medial temporal lobe."[1]


Healy, Melissa. "Too much sitting may thin the part of your brain that's important for memory, study suggest." Los Angeles Times. (Apr 13, 2018 ) http://www.latimes.com/science/sciencenow/la-sci-sn-sitting-brain-memory-20180413-story.html

Reason to Walk #4: Heart

Something to consider for individuals with high blood pressure, or at risk for heart related issues, for example if taking a tumor-drug medication; "walking briskly can lower your risk of high blood pressure, high cholesterol and diabetes as much as running."[AHA]

Researchers analyzed 33,060 runners in the National Runners' Health Study and 15,045 walkers in the National Walkers' Health Study. They found that the same energy used for moderate-intensity walking and vigorous-intensity running resulted in similar reductions in risk for high blood pressure, high cholesterol, diabetes, and possibly coronary heart disease over the study's six years."[AHA]

"Just get started, even if it's a few additional minutes per day."[AHA] "It's not all or nothing; it's step by step."[AHA]

"The findings are consistent with the American Heart Association's recommendations for physical activity in adults that we need 30 minutes of physical activity per day, at least 150 minutes of moderate activity per week or 75 minutes of vigorous activity per week to derive benefits."[AHA]

"Split up your walks into 10-15 minutes each."[AHA]


American Heart Association (AHA). "Walk, Don't Run, Your Way to a Healthy Heart."

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