Monthly Archives

May 2018

Brain Tumor Awareness

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May is also Brain Tumor Awareness Month

By Jenny

Along with stroke awareness month, May is also Brain tumor awareness month. Although most people have heard of Brain tumors, few know how widespread this incurable disease is. According to the National brain tumor society:

  • An estimated 700,000 Americans are living with a brain tumor
    • 80% tumors are benign
    • 20% tumors are malignant
  • An estimated 78,980 people will receive primary brain tumor diagnoses in 2018
    • 55,1500 will be benign
    • 23,830 will be malignant
  • The average survival rate for all malignant brain tumor patients is only 34.7%
    • Male: 33.8%
    • Female:4%
    • For the most common form of primary malignant brain tumors, glioblastoma multiforme, the five-year relative survival rate is only 5.5%
  • An estimated 16,616 people will die from malignant brain tumors (brain cancer) in 2018
  • The most prevalent brain tumor types in adults:
    • Meningiomas, which make-up 36.6% of all primary brain tumors

Gliomas (such as glioblastoma, ependymomas, astrocytomas, and oligodendrogliomas), which make-up 74.6% of malignant brain tumors

Unfortunately, more than any other cancer, brain tumors can have lasting and life-altering physical, cognitive, and psychological impacts on a patient’s life.

This means malignant brain tumors can often be described as equal parts neurological disease and deadly cancer.

It has been my experience that saying your tumor is benign gives people the impression that it is curable and isn’t a very serious situation, however this is not the case. Even benign brain tumors can be deadly if they interfere with portions of the brain responsible for vital bodily functions. It is also pretty safe to say that brain surgery is seldom benign.

There are more than 130 different types of brain tumors, many with their own multitude of subtypes. The table below shows the types of tumors that a few of our members have been diagnosed with   :

 

Name Tumor type Age at diagnosis Initial symptoms
Jenny Oligodendroglioma 37 Seizure
Jeff Astrocytoma 20 Found while undergoing unrelated medical testing
Rick Central neurocytoma 35 Uncontrollable, severe headache

In my obviously biased opinion, research into this disease and possible cures is grossly underfunded and ineffective. Data collected by Central Brain Tumor Registry of the United States (CBTRUS) in CBTRUS Statistical Facts Report of Primary Brain and Other Central Nervous System Tumors Diagnosed in the United States in 2010 – 2014 suggest:

  • Despite the amount of brain tumors, and their devastating prognosis, there have only been four (4) FDA approved drugs – and one device – to treat brain tumors in the past 30 years.
    • For many tumor types, surgery and radiation remain the standard of care.
    • There has never been a drug developed and approved specifically for malignant pediatric brain tumors.
    • The four approved drugs for brain tumors have provided only incremental improvements to patient survival, and mortality rates remain little changed over the past 30 years.
  • Between 1998 and 2014, there were 78 investigational brain tumor drugs that entered the clinical trial evaluation process. 75 failed. That is a 25:1 failure ratio in developing new brain tumor treatments over the past two decades.

It is often difficult to talk about such a hard topic, but always remember statistics don’t paint the whole picture. Brain tumor warriors are usually the bravest, toughest fighters you will ever meet. This is why we should all “Go Gray in May” to spread the word and get a spotlight aimed at this disease so that we can give hope to and encourage those living with or affected by brain tumors. NO ONE FIGHTS ALONE!

~Jenny, BIND Member

Better Speech and Hearing Month!

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Speech-Language Pathologists and Audiologists have played an instrumental role in my recovery. In the beginning of my stroke, I had global aphasia; I couldn’t speak or understand language. With the help of these professionals, I regained my communication.

May is Better Hearing & Speech Month which raises awareness about communication and the ability to hear, understand, speak, and swallow. Audiologists and Speech-Language Pathologists (SPLs) are professionals that diagnose and treat communication disorders.

Speech-Language Pathologists

Communication problems after a brain injury are common. Communication disorders occur in 25% to 40% of stroke survivors. This figure doesn’t account for those with brain tumors, brain infections, traumatic brain injuries, or anoxia. There are 1 million people living with aphasia in the United States.

Article Source: https://tactustherapy.com/acquired-communication-disorders-following-stroke/

Speech-Language Pathologists perform many functions to treat brain injury. Some of the special work they do includes treatment for the following:

  1. Dysphagia – They help patients relearn how to swallow which prevents malnutrition and dehydration.
  2. Aphasia – They treat numerous forms of aphasia including the following: receptive, reading & writing problems, and expressive aphasia
  3. Dysarthria & Apraxia – They help patients overcome speech difficulties.
  4. Cognitive Communication Difficulties – They help patients overcome executive function deficits.

Audiologists

Hearing loss can occur after a brain injury. Carolyn Rocchio of the Brain Injury Association says the following about traumatic brain injury:

“Hearing problems can occur for a number of reasons, both mechanical and neurologic, particularly when the inner ear and/or temporal lobes have been damaged. All patients should have an otoscopic examination and hearing screening followed by behavioral testing. External bleeding in the ear canal, middle ear damage, cochlear injury, and/or temporal lobe lesions can cause auditory dysfunction.” (Rocchio, 1998)

Article Source: http://EzineArticles.com/534833

Diagnostic tests are needed from an Audiologist and ENT (ear, nose, throat) doctor to determine the cause of hearing loss. The hearing tests could include one or more the following:

  1. Audiogram – This test presents a series of frequencies from low to high pitches.
  2. Speech Testing – This test looks at how well words are listened to and repeated.
  3. Tympanometry – This test evaluates the middle ear function and stiffness of the eardrum.
  4. ABR (Auditory Brainstem Response) – This test measures the timing of electrical waves from the brainstem to clicks in the ear.
  5. Otoacoustic Emissions (OAEs) – This test evaluates the sounds given off by the inner ear when responding to a sound.
  6. Electrocochleography (ECOG) – This test identifies cochlear nerve issues and Meniere’s disease.

Article Source: https://www.asha.org/public/hearing/Otoacoustic-Emissions/

Some Audiologists perform Auditory Processing (CAPD) Tests. However, not every audiologist formally acknowledges CAPD. Explanations about different CAPD Tests are included in the following link: https://www.audiologyonline.com/articles/apd-in-children-time-compressed-11953

With information from the diagnostic tests, Audiologists identify the source of the hearing issue:

  1. Tinnitus occurs when there’s buzzing, ringing, or hissing in the ears.
  2. Hyperacusis (i.e. noise sensitivity) occurs when a sound is uncomfortable.
  3. Meniere’s Syndrome occurs there’s excessive pressure on the inner ear.
  4. Auditory Agnosia (i.e. CAPD) occurs when there’s a problem in distinguishing sounds.

A treatment plan will be made which could include hearing devices, Bluetooth devices, telephones, FM systems, and/or speech therapy.

Article Source: http://synapse.org.au/information-services/hearing-problems-after-a-brain-injury.aspx

Go out today and thank SPLs & Audiologists for the special work they do in helping brain injury survivors communicate….

~Megan, BIND Member

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Do You Smell Burnt Toast?

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May = STROKE AWARNESS MONTH!

By: Carrie

So it sounds like a bad joke (it is and it’s not) but I heard it again this morning watching reruns of my favorite show Supernatural.

Person 1:“Do you smell burnt Toast?”

Person 2:”Are you having a Stroke? “

Well I didn’t when I had mine, but I’ve heard this on other TV shows and other random places. So, I thought “LMGT”= Let Me Google That and this is what pops up:

And with that google search I got this:

“There’s a popular myth that smelling burnt toast is a sign of a brain tumor, or that you’re having a stroke,” he said. “This isn’t true. “A stroke can affect any area of your brain, so it’s possible that your sense of smell can be affected, but there’s no particular smell that you need to worry about.” Sep 26, 2016

http://www.iran-daily.com/News/169295.html

There are 2 types of Stroke:

Ischemic stroke occurs as a result of an obstruction within a blood vessel supplying blood to the brain. It accounts for 87 percent of all stroke cases. Hemorrhagic stroke occurs when a weakened blood vessel ruptures. But the most common cause of hemorrhagic stroke is uncontrolled hypertension (high blood pressure).

Here is just a small break down of our members that have had strokes:

Member Age at time of Stroke Type of Stroke
Carrie 38 Hemorrhagic
Christopher 38 Hemorrhagic
Debbie 54 Hemorrhagic
Jim 64 Hemorrhagic
Mark 58 Hemorrhagic
Chris 50 Ischemic
Jenny 37 Ischemic
Jill 51 Ischemic
Megan 29 Ischemic
Michael 45 Ischemic
Ted 51 Ischemic
Yvette 40 Ischemic

 

Unfortunately not all Stroke signs are obvious, (I didn’t really have any and everybody’s are different) but you can tell if someone is having a stroke with this quick tool:

The American Stroke Association developed this easy-to-remember guide to help identify the signs of a stroke.

F – Face drooping. Is one side of the person’s face drooping or numb? When he or she smiles, is the smile uneven?
A – Arm weakness. Is the person experiencing weakness or numbness in one arm? Have the person raise both arms. Does one of the arms drift downward?
S – Speech difficulty. Is the person’s speech suddenly slurred or hard to understand? Is he or she unable to speak? Ask the person to repeat a simple sentence. Can he or she repeat it back?
T – Time to call 9-1-1. If any of these symptoms are present, dial 9-1-1 immediately. Check the time so you can report when the symptoms began.

For facts and Information visit:

http://www.stroke.org/

Signs and Symptoms of Stroke

Knowing the signs and symptoms of a stroke is the first step to ensuring medical help is received immediately. For each minute a stroke goes untreated and blood flow to the brain continues to be blocked, a person loses about 1.9 million neurons. This could mean that a person’s speech, movement, memory, and so much more can be affected.

Learn as many stroke symptoms as possible so you can recognize stroke FAST and save a life!

Stroke symptoms include:

SUDDEN numbness or weakness of face, arm or leg, especially on one side of the body
SUDDEN confusion, trouble speaking, or understanding
SUDDEN trouble seeing in one or both eyes
SUDDEN trouble walking, dizziness, loss of balance or coordination
SUDDEN severe headache with no known cause

Call 9-1-1 immediately if you observe any of these symptoms.

Note the time of the first symptom.
This information is important and can affect treatment decisions.

http://www.stroke.org/understand-stroke/recognizing-stroke/signs-and-symptoms-stroke