Welcome to the Epidermoid Brain Tumor Society

The mission of Epidermoid Brain Tumor Society (EBTS) is to inform, educate, support and fund research for those affected by the epidermoid brain tumor. When a patient is faced with surgery for the epidermoid brain tumor, the best decision that one makes is finding a skull base neurosurgeon with extensive experience and  is critical for a successful outcome. With surgery, there is assault on cranial nerves in the skull base leaving possible deficits. The surgery can be life altering with deficits and many months/years of recuperation. EBTS educates and supports the patient and family on their journey regarding the symptoms, the diagnosis, and treatments by their doctors.

EBTS promotes awareness and advocates for research for the epidermoid brain tumor. The epidermoid brain tumor can reoccur for many patients and there is a limit to how many tumors and surgeries epidermoid patients can have before quality of life is threatened. Only with research can these brain tumors be eradicated.

Patient founded, EBTS is an incorporated, non-profit organization, recognized as such by the IRS, and is supported by contributions from individuals, friends, along with corporate grants.

Join us on Facebook to find support and information from many patients from around the world.

General Disclaimer:  This website has been designed to provide information and education for the general public and healthcare professionals regarding the epidermoid brain tumor. EBTS does not endorse any commercial product, physician, surgical procedure, medical institution or its staff. EBTS encourages you to contact you own physician for any diagnosis or treatment, and do not change your treatment plan without consent from a physician.

EBTS Releases Volume III Newsletter February 2017

Dear Members: The Epidermoid Brain Tumor Society (EBTS) is a nonprofit medical support organization advocating awareness and research. We offer information, inspiration, support and hope for those affected by the epidermoid brain tumor. EBTS also provides factual information first hand to the many medical professionals that have an interest in the epidermoid brain tumor. In this Volume 3 of the EBTS Newsletter, we would like to share with you what has been happening in the EBTS organization since the last newsletter. We have experienced growth and have many more diagnosed epidermoid patients joining us for information. Welcome to our new members this year, and any others we may not have given a proper hello. We are glad to have you join us.

~ EBTS Newsletter Team

EBTS encourages members to have several surgical consults before agreeing to surgery. Best surgical outcomes are generally from large medical centers with Skull Base surgical departments. Even then, the surgical experience and results of a surgeon is most important in determining who will be your surgeon! Many members over the years have traveled out of state to have the surgery choice of a skilled and experienced skull base neurosurgeon. Members often share on Facebook their surgeons’ names. We may contact members privately for updates on their recovery, and allow members to respond to inquiries about their surgeons.

EBTS continues to grow with members from all over the world and now in 2017, EBTS has grown from a small core membership group from an old list serve (email) organization to an organized 501c3 charity. Our Webpage and Facebook support group has over 650 worldwide members. Many members are newly diagnosed and are finding EBTS post-surgical and write of their deficits, complications of surgery, recuperation along with all patient members writing of their fear of annual MRI’s which may tell of re-currency. EBTS members of all ages, come from all walks of life and live all over the world. EBTS members have interesting careers from business, engineering, education, medicine, law and artistic endeavors with talented authors, photographers, and artists. Some must place careers on hold post-surgical because of long recuperation and deficits. Some may have to adapt to a new normal and change their careers. Their life has been interrupted by this rare brain tumor, but they never think of giving up. Members only think about “keep on, keeping on” or as we say “KOKO”.

Dr. Chris Chiou, Michigan, recently finished his medical residency in Family Practice in March, 2016 after placing it on hold at the beginning of his 3rd year. His life was interrupted by the epidermoid brain tumor in March, 2013. Dr. Chiou went from fully functional to disabled overnight from post-surgical deficits. With determination and courage and over 20 months, he reentered his medical residency and graduated in March, 2016. Dr. Chiou’s personal story is found in his column ‘House Call’, on our EBTS website: http://epidermoidbraintumorsociety.org/house-call/

EBTS had almost 40 members have surgery in 2016 by early December! Two members were married, but not to each other! Five moid families added a baby to their family, and four grandmothers reported births of their grandchildren!  We reported several meet ups, many accomplishments with school or work, and two members who ran together in a half marathon!

On behalf of the board and EBTS members, It is with much appreciation that we write to thank Fay Powell for her many years of service to the EBTS. Fay has decided to retire from the board of administrators effective this past January 1, 2017. Since 1999, she has provided support to hundreds of EBTS members from offering advice, providing information or even visiting members in the hospital pre or post-surgery. Fay has been a stepping stone into the advancement of where the group is to this day. From a simple email server to a 501c3 registered charity, Fay has been there through it all. She has worked tirelessly serving on the Board and advising the Website, Newsletter, Research, Development and Fundraising committees and as an admin to the Facebook group. We will surely miss Fay’s “Mother Hen” presence she has effortlessly provided every day. Fay, we love you and thank you from the bottom of our hearts for all that you are and all that you have done for each and every one of us. Enjoy your retirement and please stay in touch. Yours Truly, EBTS Board & Members

January 31, 2017 EBTS had their Annual Board Meeting. Your officers for 2017 are Chairman: Denise Isenhour, President: Linda Frevert, Treasurer: Brian Towne, Secretary: Linda Frevert.

Remembrances

On November 19, 2015, EBTS received news from Sharon Black Schatz, Iowa, the Schatz Family, Iowa, of the death of their beloved 43- year-old son, Jamie Schatz, Wisconsin, from complications of the epidermoid brain tumor surgery. Jamie had emergency surgery February 7, 2015, at St. Francis in Milwaukee, and was moved to King, VA, near Wacupa, Wisconsin. Since surgery in February 2015, Jamie had 8 surgeries and only back home but a few days. Shunt malfunction was a constant problem along with several other medical complications of blood clots in lung and leg and a mild heart attack. Jamie, an Iraq veteran, was married and leaves a wife and two small children. Our heartfelt sympathies go out to parents, Al and Sharon Schatz, Iowa, and sister, Lori Schatz Miller, Iowa, all members of EBTS.

 

EBTS sends condolences to member Katie Enever, UK, and her family. Katie’s mother, Margaret Enever, passed away on February 7, 2016, in the UK. Margaret, living in south of France at the time of her 2013 diagnosis returned to her native UK for surgery. Katie joined EBTS as her mother did, to gain information from us, and moved from Thailand where she was working to the UK to be with her mother. Margaret was asymptomatic and only had problems with balance and had survived a few falls. She was 72 years of age. Katie mentioned in her first posts about her mother showing signs of short term memory loss and wanted to know if this could be age related or an epidermoid symptom. Later, the consultant, prior to surgery, Sept. 2015, categorically told the family that Margaret did not have dementia, only symptoms related to the epidermoid brain tumor. After surgery, a shunt was inserted to control hydrocephalus. This did not work and the family was then informed that Margaret had vascular dementia. Needing full time care, the family moved Margaret to a care home until her death.

 

EBTS was very saddened to read the post of UK’s Andrew Mills informing of the May 31, 2016, passing of his dear wife, Christine Mills, UK, who had suffered the past few years with an epidermoid brain tumor. Christine (Chrissie) was diagnosed with an epidermoid brain tumor many years ago and had many surgeries in her lifetime. We share your sorrow, Andrew. Our hearts are saddened by your loss and our thoughts and prayers are with you.

We mourned the deaths of these members in 2015 and 2016.

Useful Research and Information

Epidermoid Brain Tumor Society mission as a medical support group is to share information about the epidermoid brain tumor and to spread awareness.  http://rarediseases.org/organizations/epidermoid-braintumor-society/

Renowned skull based neurosurgeon, Dr. Takanori Fukushima, is requesting his epidermoid surgical patients who are members of EBTS to contact him. Dr. Fukushima is currently in the process of researching the epidermoid brain tumor and has requested that his patients contact his office about their condition or send past year MRI’s to his office. Local patients that are EBTS members need to come in and see Dr. Fukushima. This will help greatly to get results on paper quickly. When completed, Dr. Fukushima will share the research with EBTS organization. Contact information: http://www.carolinaneuroscience.com/  or http://takanorifukushima.com/

Questions Asked by Members/Information Shared

More times than one can count, the question about recurrence of the epidermoid brain tumor is asked, and also can the epidermoid brain tumor have radiotherapy or be radiated. EBTS shares this link in response: Tumor recurrence rate of 9%. Radiotherapy for recurrent epidermoids: http://www.ncbi.nlm.nih.gov/pubmed/23400752

Alcohol use with a brain injury:  http://www.brainline.org/content/2012/06/alcohol-use-after-traumatic-brain-injury_pageall.html   

Has Management of Epidermoid Tumors Improved?  http://europepmc.org/articles/PMC2435477

How Important is it to Find a Skull Based Surgeon? https://www.mdanderson.org/transcripts/tender-treatment-for-rare-skull-base-tumors.htm

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

Tumor Re-Occurrence Rates  http://www.ncbi.nlm.nih.gov/pubmed/25558422

Prepare for Surgery and Recovery   http://www.mayfieldclinic.com/PE-Craniotomy.htm

Hydrocephalus and Shunts  http://www.hydroassoc.org/shunt-systems/

Giant Epidermoids, Is Total Removal Feasible? https://www.ncbi.nlm.nih.gov/pubmed/25594324

Disability Evaluation   https://www.ssa.gov/disability/professionals/bluebook/11.00-Neurological-Adult.htm#11_05

Thank you to member Jerry Parker, Illinois, for sharing this insightful article, “Making the Cut: Why Choosing the Right Surgeon Matters More Than You Know.” It is about the importance of picking the right surgeon and states, “So many posts on our forum discusses this issue and the article reinforces it with data.” https://www.propublica.org/article/surgery-riskspatient-safety-surgeonmatters

EBTS knows that any support organization is only as strong as its members and we appreciate the caring support that membership does in regard to sharing your own story or experiences as you journey with the epidermoid brain tumor.

Please join us in funding research and awareness of the epidermoid tumor! http://epidermoidbraintumorsociety.org/donate/

Contact us by email at:  epidermoidbraintumorsociety@gmail.com

Wishing you the Best for 2017!

~EBTS Newsletter Team