Resources

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

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 sketches  http://www.gwc.maricopa.edu/class/bio201/cn/cranial.htm 

Finding a Neurosurgeon

http://www.nasbs.org/directory/memberslist.php

http://surgery.about.com/od/beforesurgery/a/FindSurgeon.htm

Questions to ask a neurosurgeon

http://epidermoidbraintumorsociety.org/questions-for-your-doctor  

http://www.privatehealth.co.uk/healthprofessionals/doctor-questions/#after

Brain Surgery

Prepare for surgery   http://www.brain-surgery.com/pre-op-preperation-before-brain-surgery/

Surgery  http://www.brain-surgery.com/the-brain-surgery-operation/

Possible side effects of brain surgery   http://www.brain-surgery.com/what-are-the-side-effects-of-brain-surgery/

Discharge from the hospital  http://www.brain-surgery.com/discharged-after-brain-surgery-what-happens/

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

Resources for Brain Tumor Complications

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

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

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

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/ 

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/

DISCLAIMER:   EBTS DOES NOT PROMOTE OR ENDORSE ANY OF THE ORGANIZATIONS OR TREATMENTS LISTED, NOR GUARANTEE THAT INDIVIDUALS WILL QUALIFY FOR, OR BENEFIT FROM, SERVICES BY ANY OF THESE PROVIDERS THEY MAY CONTACT. EBTS ENCOURAGES YOU TO CONTACT YOUR OWN PHYSICIAN FOR ANY DIAGNOSIS OR TREATMENT, AND DO NOT CHANGE YOUR TREATMENT PLAN WITHOUT CONSENT FROM A PHYSICIAN.