Welcome to the Epidermoid Brain Tumor Society
The mission of Epidermoid Brain Tumor Society (EBTS) is to inform, educate, and to provide a support and research organization for those affected by the epidermoid brain tumor. When a patient is faced with surgery for the epidermoid brain tumor, the decision that one makes of finding a medical professional with extensive experience 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.
Brain Tumor Awareness Month
It is the month of May. This is the month that the national huge charities for brain tumors raise awareness and critical funds for promising research across the United States. EBTS joins in with our own effort to raise specific funds for epidermoid brain tumor research. With benign always written in front of the epidermoid brain tumor, this does not tell the full story of how dangerous and challenging this benign tumor can become at the location in the skull base. It is an invader and needs to be eradicated. This can only happen with epidermoid research.
Last year, EBTS dedicated the month of May Brain Tumor Awareness to our own patients that had suffered with the epidermoid, lost their battle and had other contributing factors, and are no longer with us. This year of 2015, EBTS dedicates our 2nd Annual May Brain Tumor Awareness Month to the children in our group who have had challenges with the epidermoid. It has changed their young lives, and their lives going forward are not as bright due to this tumor. Please help us as we search for answers! There is a great need for research when you read stories like the one below. No child or adult should be subjected to the epidermoid brain tumor.
At two years of age, JaNiyah’s mother noticed that JaNiyah had weakness on her right side. MRI diagnosis showed an epidermoid in the location of the skull base. Her first surgery for debulking treatment (removing some of the contents of the tumor, not removing the tumor) was June, 2011. The epidermoid sac soon filled back up again resulting in second debulking surgery in January, 2012. She went a whole year without being in the hospital after this. But because of surgery scar tissue, excess cerebrospinal fluid (CSF) had collected and JaNiyah had to be shunted to remove fluid and improve circulation of CSF.
The ventriculoperitoneal (VP) shunt failed, and the doctors’ only intervention was a third debulking surgery in August, 2013. She was placed back in hospital for check in May, 2014, to see if the CSF would circulate correctly with a tube directly placed into tumor to drain the tumor. The thickness of the CSF and contents of the tumor closed the tube. Her neurosurgeon decided against debulking for the 4th time because lack of previous success. JaNiyah’s mother was told that the surgeon would have to go in manually to remove contents. JaNiyah had a traditional craniotomy surgery in December, 2014.
JaNiyah’s fourth surgery unfortunately has left her in a wheelchair. Hopefully by next year, she will make progress and make her wish come through to be a cheerleader for peewee basketball. She likes to sing and dance so she would be a natural cheerleader. When asked about JaNiyah’s favorite things to do, her mother says she likes hanging out with her. Also playing outside with her big brother and looking at movies. And she loves her little cousins and loves being their babysitter when they are around. All in all, Jennifer Coleman says her “best friend” is full of joy all the time. JaNiyah received a gait walker trainer recently to help her to walk again. She is thrilled; her mother says and JaNiyah is hanging in there from her last surgery with a great positive attitude. And her mother speaks of her as “OK” and a regular six year old girl looking forward to school this fall.
The last four years of life, JaNiyah has been subjected to many treatments as the neurosurgeon and staff at UF Health Shands Hospital, Gainesville, Florida, try to treat her epidermoid brain tumor. They can’t seem to make it go away or stop growth. Research for this brain tumor is needed so that JaNiyah or any child or adult does not have to go through life with the challenges of the epidermoid brain tumor diagnosis and treatment.
Please help us by donating what you can to help in our search for answers for JaNiyah and others.