Resources – Epidermoid Brain Tumor Society

RESOURCES AND LINKS

This Resource page lists webpages with what you need to know with diagnosis of an epidermoid brain tumor. It includes brain tumor associations, caregiver organizations along with mental health/counseling, legal issues, employment advocates, brain training games, to health dictionary and medication information. Here you will find an overview of the epidermoid and similar benign brain tumors with anatomy and cranial nerve illustrations, and charts. We have included information about neurosurgery (with questions to ask your neurosurgeon), about your post op experience, what to watch for when you are home and complications of brain surgery along with research on the epidermoid brain tumor.

Introduction to Brain Tumors and the Epidermoid Tumor or Cyst

Epidermoid 101 http://www.nervous-system-diseases.com/epidermoid-cyst.html

Benign Brain Tumors of the Skull Base Treatment, Management, Complications (We do not advise biopsies as the leak causes meningitis) https://emedicine.medscape.com/article/882751-overview

American Brain Tumor Association about the Epidermoid http://www.abta.org/sitefiles/pdflibrary/Cysts_08_10.pdf

Overview of Skull Based Tumors http://emedicine.medscape.com/article/883090-overview

CPA or Skull base Tumors http://emedicine.medscape.com/article/875661-overview#aw2aab6b4

Imaging of Epidermoids http://emedicine.medscape.com/article/340467-overview

Benign Tumor Overview Video from Mayo Clinic https://www.youtube.com/watch?v=ojTyeBEqoMY

Has Management of Epidermoid Tumors Improved? http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2435477/

Brain Tumor Organizations

American Brain Tumor Association www.abta.org

National Brain Tumor Society www.braintumor.org

Brain Tumour Foundation of Canada http://www.braintumour.ca/

International Brain Tumor Alliance http://www.theibta.org/

Brain Anatomy and Cranial nerves

Cranial Nerve Chart http://media.web.britannica.com/eb-media/44/54244-004-892C5169.jpg

Cranial Nerves http://www.aboutcancer.com/cranial_nerves_081909.jpg

Pictures and nerve functions http://faculty.washington.edu/chudler/cranial.html

Cranial nerves, click on each nerve http://www.yale.edu/cnerves/

Cranial nerve diagram http://www.fbs-wp.leeds.ac.uk/repository/rope/cranial-nerves/

Surgery and possible complications of a benign brain tumor (acoustic neuroma is a similar tumor to epidermoid) http://neurosurgery.mgh.harvard.edu/CranialBaseCenter/acoust-2.htm#Complications

Cranial Base surgery and rehab http://www.hopkinsmedicine.org/neurology_neurosurgery/centers_clinics/brain_tumor/treatment/surgery/post-surgery-care.html

Risks for any anesthesia are:

Reactions to medications
Problems breathing

Possible risks of brain surgery are:

Surgery on any one area may cause problems with speech, memory, muscle weakness, balance, vision, coordination, and other functions. These problems may last a short while or they may not go away.
Blood clot or bleeding in the brain
Seizures (up to a 25% risk)
Stroke
Coma
Infection in the brain, in the wound, or in the skull (if not treated promptly, it will lead to sepsis) caused commonly by a CSF leak (fluid around the brain leaks out)
Brain swelling

http://www.nlm.nih.gov/medlineplus/ency/article/003018.htm

After surgery care: http://www.brain-surgery.com/after-brain-tumor-surgery/

Personality changes and depression after tumor diagnosis or surgery: http://www.brain-surgery.com/can-your-personality-change-after-brain-surgery-absorb-information-from-a-to-z/

Blog from a Neurology Surgical Nurse about surgery: http://head-nurse.blogspot.com/2008/11/what-to-expect-when-youre-expecting.html

Patients Blog about her after surgery symptoms: https://blueridgedrifters.wordpress.com/2017/01/16/post-brain-surgery-symptoms/

Life After a Benign Brain Tumor https://medicine.yale.edu/neurosurgery/surgicalservices/neurooncology/braintumoreducation/lifeafter/lifeafterbenign.aspx

Resources for Brain Tumor Complications and Traumatic Brain Injury from surgery

Complications of brain surgery http://neurosurgery.mgh.harvard.edu/CranialBaseCenter/acoust-2.htm#Complications

Follow up and Post op Care: http://www.hopkinsmedicine.org/neurology_neurosurgery/centers_clinics/brain_tumor/treatment/follow-up-care.html

Hydrocephalus- Excess fluid around the brain http://www.medicinenet.com/hydrocephalus/article.htm

Diagram of shunt placement: http://www.brain-surgery.com/wp-content/uploads/2012/05/shunt-placement-in-hydrocephalus.jpg

Lumbar Drain by a Nurse: http://head-nurse.blogspot.com/2009/02/what-to-expect-when-youre-expecting.html

Meningitis: Infection in or around the brain http://www.cdc.gov/meningitis/bacterial.html

http://www.webmd.com/brain/meningococcal-meningitis-symptoms-causes-treatments-and-vaccines

Trigeminal Nerve Pain minimal invasive surgery option information: http://face-facts.org/treatments/neuralgia-treatments/procedures/rhizotomies/

https://www.mayfieldclinic.com/PE-PSR.htm

American Chronic Pain Association: https://theacpa.org

Traumatic Brain Injury Guide: http://tbiguide.com/

TBI Self Therapy guide: https://brokenbrilliant.files.wordpress.com/2014/03/self-therapy.pdf

Traumatic Brain Injury http://www.traumaticbraininjury.com/

http://www.ninds.nih.gov/disorders/tbi/tbi.htm

http://www.biausa.org/living-with-brain-injury.htm

Psychiatric Issues in Brain Injury Slideshow http://www.slideshare.net/lillygodiva/psychiatric-issues-in-traumatic-brain-injury

Depression and anxiety with a tumor diagnosis slideshow by ABTA: http://www.abta.org/resources/2013-patient–family-conference-presentations/understanding-and-managing.pdf

Dr. Diane’s Journey: http://www.drdiane.com/about-dr-diane/dr-dianes-story/

Nervous System Disorders and Complications: http://www.nervous-system-diseases.com/index.html

Rapid regrowth after surgery. may be a bacterial cause- a case study from UK 2006: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1502036/

Meningitis: http://www.webmd.com/brain/meningococcal-meningitis-symptoms-causes-treatments-and-vaccines

Hydrocephalus: http://www.medicinenet.com/hydrocephalus/article.htm

Seizures: http://epilepsyfoundation.org/aboutepilepsy/seizures/index.cfm

http://www.epilepsy.com/node/2002206

Video about Seizures and Brain Tumors: https://www.youtube.com/watch?v=kxXXMKgLUpg

Cranial Nerve Rehabilitation

Facial Nerve: http://neurosurgery.mgh.harvard.edu/CranialBaseCenter/b95.htm#Predicting

National Foundation for Swallowing Disorders: http://swallowingdisorderfoundation.com/

Hearing Loss: http://hearingloss.org/content/living-hearing-loss (Hearing aids may not work on brain tumor induced hearing loss, but the tips at the bottom of the page are excellent)

Balance Disorders: http://www.hearingloss.com/dizziness-or-loss-balance#sthash.sY4gMpt3.dpuf

Vestibular Disorders: http://vestibular.org/understanding-vestibular-disorder

Brain Tumor Surgical Videos – Not for the faint of heart!

Member Sonya Parra surgical video with Dr. Fukushima in Japan March 15, 2011: https://youtube.com/watch?v=4nPoEgpDpTw&feature=em-share_video_user

2013: Retrosigmoid Approach to the CPA in Epidermoid surgery Boston, MA – Excellent condensed video.

Endoscopic Endonasal Minimally Invasive Skull Base Surgery https://www.youtube.com/watch?v=1ki26qyOuNU

Temporo-Parietal Epidermoid Tumor Removal- India https://www.youtube.com/watch?v=_V3RBvwEglA

Cerebello-Pontine Angle anterior brain stem epidermoid removal-India: https://www.youtube.com/watch?v=zUC5onawj08

CPA Epidermoid Trigeminal nerve and Meckels cave area: https://www.youtube.com/watch?feature=share&v=_jW_jad_pe0&app=desktop

Research on Epidermoid and Similar Benign Tumors

2015 Study from Arkansas Neuroscience Institute: Giant intracranial epidermoids: is total removal feasible https://www.ncbi.nlm.nih.gov/pubmed/25594324

2015 Taiwan, UK, Germany, Japan Update and Knowledge gaps of Cholesteatoma Research http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4381684/#B12

2014 USA California http://www.ncbi.nlm.nih.gov/pubmed/23548848

2014 Hungary http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3934790/

Brazil http://www.ncbi.nlm.nih.gov/pubmed/25558422

2012 USA, California http://www.ncbi.nlm.nih.gov/pubmed/23032664

2012 Bangladesh http://www.ncbi.nlm.nih.gov/pubmed/23189019

2011 China http://www.ncbi.nlm.nih.gov/pubmed/21247769

2011 South Korea http://www.ncbi.nlm.nih.gov/pubmed/21959487

2010 Clinical Presentations of Epidermoids http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3198667/

2010 Endoscopic http://www2.mdanderson.org/depts/oncolog/articles/10/11-12-novdec/11-12-10-2.html

2010 South Korea Trigeminal pain http://www.ncbi.nlm.nih.gov/pubmed/20461167

2005 Japan Multiple tumors http://www.ncbi.nlm.nih.gov/pubmed/15849462

2002 Japan CPA 30 patients http://www.ncbi.nlm.nih.gov/pubmed/11844262

2001 Italy One case study http://www.ncbi.nlm.nih.gov/pubmed/11358593

1997 India 25 patients http://www.ncbi.nlm.nih.gov/pubmed/8971820

1994 Japan One case, temporal lobe, giant epidermoid http://www.ncbi.nlm.nih.gov/pubmed/8072636

Resources for Mental Health/Counseling

Brain Tumors count as a major life event. Everyone may need a little help now and then!

American Psychological Association: http://www.apa.org/

National Board of Certified Counselors: www.nbcc.org

Pediatric Child Psychologists: www.abpdn.org

American Association for Marriage and Family Therapy: www.aamft.org/iMIS15/AAMFT/

Mental Health Net Resources: https://www.mentalhelp.net/

Brain Training Games

http://www.gamesforthebrain.com/

http://www.lumosity.com/app/v4/personalization

http://www.brainist.com/

Caregiving Resources

http://www.abta.org/brain-tumor-treatment/caregivers/

http://www.medicinenet.com/caregiving/article.htm

http://www.caregiving.org/about

http://www.aarp.org/relationships/caregiving/

http://caregiver.org/caregiver/jsp/fcn_content_node.jsp?nodeid=2083

http://www.webmd.com/healthy-aging/caregiving-insights/default.htm

Employment, Disability, Legal Issues

Social Security Disability http://www.ssa.gov/disabilityssi/

Social Security Evaluation for Disability https://www.ssa.gov/disability/professionals/bluebook/11.00-Neurological-Adult.htm?fbclid=IwAR3QuHPXTx71sHyOSXtgC11tVyZq0l9NXcqP8CybGdbYCOh8Sac3ydHoB3U#11_05

Americans with Disability Act www.ada.gov

Legal Services Corporation Access to justice and assistance for low income Americans www.lsc.gov

Employment information www.patientadvocate.org

Equal Employment Opportunity commission www.eeoc.gov

Job Accommodation for ADA www.jan.wvu.edu

Office of Disability Employment Policy www.dol.gov/odep

Dictionary, Translator, and Medication

Medical Dictionary http://www.online-medical-dictionary.org/

Medical Glossary http://www.medicalglossary.net/glossary-c-0-1.htm

Google Translator to many languages http://translate.google.com/#

Look up your medications http://www.rxlist.com/drugs/alpha_a.htm

Medical Physicians’ Desk Reference for medications http://www.pdr.net/

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