Today is Rare Disease Day, February 23, 2017!
Our Partner Global Genes Foundation Alliance has a member who made a slide show for children, to explain about Rare Diseases! Take a look and feel free to share! https://docs.google.com/presentation/d/1PMRgrT0VcaEnCFVyCQTJsp09OdHnkAzmPeH-c1_9tac/edit?ts=58b108b1#slide=id.g1c393870fd_0_25
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.
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: email@example.com
Wishing you the Best for 2017!
~EBTS Newsletter Team
We are Partners with NORD and Global Genes Allliance. Board member of GGA and psychologist Kathleen Bogart at Oregon State University has a study that some in our organization might be interested in participating. “The study focuses on quality of life among people with a variety of rare diseases. The outcome of this project will be to provide information to rare disease organizations and healthcare professionals about how best to support quality of life needs. Make this the largest study on quality of life with a #raredisorder. Please share!” Here is the link for more information.
EBTS dedicates our 3rd Annual
May Brain Tumor Awareness Month
to Dr. Chris Chiou, Michigan.
Dr. Chris Chiou 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 was diagnosed with a 4.5 cm brain mass in the posterior fossa. The next week, the mass was removed in a 16 hour surgery. The mass was identified as an epidermoid brain tumor. Since surgery, Dr. Chiou went from fully functional to disabled overnight from post-surgical deficits. These past years, Dr. Chiou has been challenged with deficits from the epidermoid surgery, yet he never gave up. With determination and courage, he reentered his medical residency and graduated in March, 2016.
Writing in his recent column, “House Call”, he wrote of re-entrance back to his life being rocky and continues to be an ongoing journey, but one that was necessary. It took 20 months before Dr. Chiou was back in his residency. Dr. Chiou’s personal story is found in his introduction on our “House Call” Blog page:
In a House Call article written especially for our EBTS membership, Dr. Chiou, in expressing thoughts of what or who is to blame for the epidermoid brain tumor, relates to members that his condition is NO-ONE’S fault. “I just happened to win the lottery for getting a congenital brain mass – because the mass and its location are so rare, I have had difficulty coming up with studies or articles that cite the chance of having this type of mass (with the ensuing symptoms), but according to my calculations, less than one in a million people will have this mass in their posterior fossa with subsequent Posterior Fossa Syndrome. I can either search for someone or something to blame this on, or just cough it up to luck (good or bad). After much thought, I’ve realized it really doesn’t matter whose fault it is. After a tragedy, our thoughts should not be, Who’s to blame? It ought to be, How can this be prevented in the future? How can others avoid the same mishap? Instead of looking for someone or something to blame, would it not be more productive to find the source of the problem?”
Rapid Regrowth After Surgery- A Case Study
A 30 year old woman had surgery for a large epidermoid, and had regrowth within a year. After a second surgery she had regrowth within 6 months. The surgeon took a specimen and had it grown in a lab for a ‘prolonged’ time, and it showed a low grade Staphylococcus infection. She was treated for the infection and had no further issues. See the study here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1502036/
Fall/Winter 2015 – Volume II
Dear Members and Friends:
The Epidermoid Brain Tumor Society (EBTS) issues our annual newsletter to members and friends in order to strengthen and spread awareness about the epidermoid brain tumor. With our recent questionnaire, EBTS discovered many of our 400 members were not active posters or readers and did not see the research survey pinned to Facebook support. Therefore, in order that EBTS news and activities of EBTS will go out to everyone; this is the effort of administrators to reach those with an email address registered with EBTS from Facebook: https://www.facebook.com/groups/epidermoidbraintumorsociety/
and webpage membership: http://epidermoidbraintumorsociety.org/
EBTS, a non-profit, is a 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.
We hope everyone had a great spring/summer. In Volume 2 of the EBTS Newsletter, we would like to share with you what has been happening in the EBTS organization since the last annual newsletter. We have experienced growth and have many more patients and parents joining us for information. Ages of the newly diagnosed are from two years of age to late sixties. 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
The epidermoid, a rare and benign (i.e. non-cancerous) tumor of the brain, is made up of normal skin cells (stratified epithelial lining) on the outside, and fatty acids and (desquamated) keratin on the inside of the tumor or sac. Only the sticky outer layer is alive thus sticking to brain tissues and nerves. These tumors arise from ectodermal (skin) cells entrapped during neural tube closure. The tumor forms from the 3rd to 5th week of fetal development. Rarely, it can be acquired because of injury or surgery. The incidence of intracranial epidermoids is between 0.2% to 1.8% of all brain tumors diagnosed in a year.
Intracranial epidermoid tumors are slow-growing lesions, which may recur after incomplete resection (surgery), but may do so over many years. The epidermoid is difficult, but not impossible to remove from location even though epidermoid tumors encase and surround nerves and arteries rather than displacing them. The treatment of choice is surgery. The other option is watch and wait, if possible. The skull base neurosurgery for removal is challenging and requires a very skilled skull base neurosurgeon with experience to give you the best outcome with the very first surgery.
EBTS would like to inform members that at the time of surgery, if the decision is made to have surgery, that a request to your neurosurgeon to save a tissue sample for future research of the epidermoid would be commendable. The patient will have to give permission to do so. Also the preparation for this sample to be placed for holding in a tumor repository may incur a fee which is very nominal. A Duke researcher’s correspondence with EBTS about research stated: “this is the one of the best things that our Society could do is to start collecting samples of the epidermoid tumor. This would be a large undertaking because the Society would have to decide what information (clinical) could be collected, yet, from a scientist’s perspective; it all starts with having access to well-characterized clinical information and samples on which to perform genetic/genomic analyses.”
How to find a good neurosurgeon?
EBTS patients are very familiar with Linda Frevert RN, BSN, who patiently answers all questions day and night…she is really on call 24/7. Linda joined the early epidermoid organization when diagnosed in 2001. She is a wait & watch patient with years of experience with research in epidermoid brain tumors and complications of surgery for the epidermoid. The organization would not be what it is today without Linda and her dedication to the Epidermoid Brain Tumor Society.
How do we find a skull base neurosurgeon to begin our search if and when we need surgery? Look up the doctor online and Yahoo search is useful to find a neurosurgeon’s professional page. Where did they go to school? If school is a recognized name, then they had to have “smarts” to even be there. Then look at their specialties and areas of interest. If your tumor is deep in the skull base, below your eyes, then you need a skull base neurosurgeon. Look for skull based tumors, skull lesions, and it should be closer to the top of the list. For example spine and neck surgeries should not be listed above the skull based area of interest! You do not want a spine surgeon! Although the ankle is connected to the knee through the leg, you would not go see a foot doctor to replace your knee! It is all specialized now. Same within the brain. “Practice makes Perfect” is my motto. Just like you and your job, the more you do it, the better you do it! Here is one example of a skull base surgeon that I consulted with in 2001. Look for the words skull base. That’s what you should see on any surgeon’s informational webpage you consult with! http://www.mayoclinic.org/biographies/link-michael-j-m-d/bio-20053693
Dr. Chris Chiou’s House Call
The Epidermoid Brain Tumor Society welcomes Dr. Chris Chiou to its membership. In March, 2013, Dr. Chiou was diagnosed with a 4.5 cm brain mass in the posterior fossa. The next week, the mass was removed in a 16 hour surgery. The mass was identified as an epidermoid brain tumor. Since surgery, Dr. Chiou went from fully functional to disabled overnight from post-surgical deficits. In May, 2014, he decided that his story needed to be told and began the blog http://www.handicappeddoctor.com/ Reprinting articles from his own blog, and writing new ones especially geared to the epidermoid patient, Dr. Chiou shares his particular insight with his own journey, both as a doctor and as a patient. http://epidermoidbraintumorsociety.org/house-call/
Dr. Chris Chiou’s article in House Call’s May, 2015, gave an insightful view with an interview of his own skull base neurosurgeon, Dr. Cormac Maher, University of Michigan Health System. http://medicine.umich.edu/dept/neurosurgery/cormacmaher-md
Dr. Chiou writes his lead-in: “Dr. Cormac Maher specializes in skull base tumors, often the location for Epidermoid Tumors. In fact, in full disclosure, he is the Neurosurgeon who operated on me. To be exact he is a Pediatric Neurosurgeon, but when I saw one of the head adult Neurosurgeons at the University of Michigan, he told me (regarding my tumor) “Chris, I am going to have one of my colleagues, Dr. Maher, a Pediatric Neurosurgeon, see you. To be honest, he is much more experienced than I in this location. If it were my son, I’d want him to see Dr. Maher.” “Neurosurgery is an amazing field; one that not only requires exact precision, but also one that demands an incredible amount of time and devotion. Knowing this, I was very grateful that Dr. Maher would take time out of his busy schedule to answer my questions.” EBTS is also grateful that Dr. Masher graciously shared his thoughts on skull base neurosurgery. http://epidermoidbraintumorsociety.org/2015/05/interview-with-a-neurosurgeon/
Epidermoid Brain Tumor Society is registered in the NORD Patient Organizations Database
Recently, a new member posted on EBTS Facebook with this illustration and a question to members. “My husband had most of an epidermoid brain tumor removed on December 16, 2013. We were told, prior to the surgery, that his recovery should just take a few months and he would be back to “normal”. His voice, swallowing abilities, memory, cognitive abilities and entire right side of his body are still not functioning correctly, but all of his Dr.’s just continue to say it will take time. This has been very frustrating. Is there something we should be doing to help his recovery?” Immediately, members posted and rallied around this new member and her post-surgical husband who has deficits from epidermoid surgery.
Our EBTS medical administrators were quick to respond with good feedback:
Kate Hughes Könnecke, Germany: I work in Neuro Rehab. The answer is therapy, therapy, therapy. Occupational, speech, physio, Sports therapy and, if possible, neuropsychological. I am now 12 years post-surgery. I am still doing physio and occupational therapy. Can compensate my deficits so well that people don’t notice. Driving: big subject. We perform obligatory tests and around 50% fail due to cognitive deficits. I did too. Took 2 years of neuropsychological training to be fit to drive – have a visual attention deficit (also known as visual neglect) a disorder of the right parietal lobe. The cerebellum imitates other neurological deficits (*Diachisis). My remaining problems are a hemiparesis, dystonia, epilepsy, vestibularis paroxysms, an acquired arachnoidal cyst & mild cognitive deficits.
With a lot of training I drive, work full time etc., but it is all done to training and doing a lot of “homework” e.g. doing physio also by yourself at home and not just during sessions. *Diaschisis (from Greek διάσχισις meaning “shocked throughout”) is a sudden loss (or change) of function in a portion of the brain connected to a distant, but damaged, brain area. The site of the originally damaged area and of the diaschisis are connected to each other by neurons.
Linda Patterson Frevert, Kansas, US: I agree, THERAPY! Over a couple of dozen members had surgery last year, and almost half have some lingering problems, or had severe early complications. It is life changing. See our website Resources: http://epidermoidbraintumorsociety.org/resources/, and also http://www.tbiguide.com/
EBTS “Shout Outs!”
Look who is hanging out together…
Diane Good Y’all posted August 20, 2015 , “ I got to meet Jay Holmes and Celeste Conrad today. So lucky!”
Yvette Ritmeijer attends Theater Festival Boulevard Den Bosch in August, 2015 with fellow Dutch Moid and dear friend J V.
We wish Peter good days recuperating from his 6th.surgery in July, 2015. Peter will have surgery again in October, 2015. Hopefully, may it be his last one. Peter’s sister, J writes, “This is my brother Peter. He had surgery at Duke, Durham with Dr. Fukushima and Dr. Zomorodi. He is now back in Grand Rapids in a rehab facility. He’s doing well, but is suffering from steroid sickness. Peter has Super Tumors. As fast as they debulk them it seems another one appears. Dr. Fukushima will perform Peter’s 7th surgery at the end of October. We take our miracles in small doses.”
Vincent Thomé, second from left in this photo, recently traveled to Houston for HOBY – Hugh O’Brian Youth Leadership’s Training Institute. In message, he admitted: “It was some of the most rigorous and rewarding training that I’ve had the privilege of participating in as a volunteer. I’m honored to be among a select few leading the 2016 Leadership Seminars as Chair of HOBY New Mexico. Our organization was recognized for OUTSTANDING leadership, 136% growth at our 2015 Seminar, our first-ever Community Leadership in Las Cruces.” Vincent Thomé is an epidermoid brain tumor survivor and his personal story can be found in Stories on the EBTS website.
EBTS member, J O, Mass., with team mate on back, participating with family/friend team mates in the challenging MUDDERELLA on September 12, 2015. Mudderella Run is 5-7 miles with 14-16 obstacles. J O had successful second surgery on October 12, 2014 by Dr. Fukushima at Raleigh/Durham Hospital. J O is an epidermoid brain tumor survivor and says, “I am actually in the best shape of my life. I work-out 5 days a week and I starting running 3 months ago as well to prepare”. Mudderella is a charity run for Futures without Violence. This charity accepts charity partners across the globe and if EBTS members would like to participate in an event in 2016, please let EBTS know of your interest. http://mudderella.com/charity-partners/
Games for the Brain
Play quiz, memory & brain games to train your thinking. http://www.gamesforthebrain.com/
Miraculous! “To have and to hold, for better or for worse, for richer, for poorer, in sickness and in health, to love and to cherish; from this day forward until…”
EBTS has updated the Jane and Mike Greener story! Jane had surgery twice in 2015. This story tells much of the couple’s journey living and coping since Jane’s diagnosis and surgery for the epidermoid since diagnosed in 1989, four years after their wedding. Thanks again, Mike and Jane Greener, for sharing your journey with the “Miraculous” story on EBTS webpage. http://epidermoidbraintumorsociety.org/miraculous/
In 2015, Members of EBTS had June weddings! Please meet our newlyweds…
Naomi and Pete Marley, UK, and Hurley
2015 Well Wishes to:
Epidermoid Brain Tumor Patients who had epidermoid brain tumor surgery from late 2014 through August, 2015.
J, 6 yr.old daughter of J C, Florida, (4th surgery) 12/2014 Dr. David Pincus, UF Health –ShandsHospital, Gainesville, Fla.
D M S, Pennsylvania 8/14/ 2014 Dr. James Evans, Jefferson University Hospital, Philadelphia, Pa.
M C, California (son of D C Cl) 9/15/2014 Sacramento, Ca.
E K, Delaware (3 surgeries) 9/ 2014, 10/2014, 10/ 2014, Dr. Kevin Judy, Jefferson Neuroscience, Philadelphia, PA
M M M, Philippines (2nd.surgery) l/2015 Philippines Hospital
C M H, Ohio 2015 Dr Recinos, Cleveland Clinic, Cleveland, Ohio
A M, Indiana, (3 surgeries) 2005,1/20/2015 and 1/22/2015 Dr Aaron Cohen-Godahl, IU Health Methodist Hospital, Indianapolis, IN
J G, Indiana, US (4 surgeries) 1/16/15,7/ 1/ 2015 Dr. Fukushima w/ Dr. Zomorodi, Duke/Raleigh Hospital,Raleigh, NC.
Two EBTS members from Iowa shared surgery of their son and brother (Iraq War Veteran) 1/2015
H Z, Turkey 1/28/2015 Turkey Medical Hospital at Armed Forces Base
M F, California 2/9/2015 Lawrence D. Dickerson, MD. , Pacific Brain & Spine Medical Group, Ca.
D M S, Pennsylvania 8/14/ 2014 Dr. James Evans, Jefferson University Hospital, Philadelphia, Pa.
M B, Washington 2/9/2015 Laligam N. Sekhar M.D., UW Medicine, Harborview, Seattle, WA.
C K, Sweden 3/4/2015 Akademiska sjukhuset (Academic Hospital) in Uppsala, SwedenVolume 11, Oct. 1, 2015
M R S, Mass. 3/6/ 2015 Dr. Fukushima and Dr. Zomorodi, Duke/Raleigh Hospital, NC.
H W, Cleveland, Ohio 3/11/2015 M. Vogelbaum, MD., Cleveland Clinic, Cleveland, Ohio, US
H S, UK, (3 surgeries) 3/ 17/2015 Mr. Mathad, Southhampton General, UK
A S, Canada, 4/24/ 2015 Dr. Gentili, Toronto Western/ Toronto General
J/B M’s brother, Fla. 4/24/2015 Dr. John J. Viola, MD, Martin Medical Group, Stuart, Fla.
S T, California, 5/1/2015 University California, San Francisco, CA
S C, Alabama, 5/1/2015 Dr. Zoromodi, Duke University Medical Center, Durham, NC
S L, Indiana (3 surgeries) 5/2015 Dr. Neil Troffkin, Neurosurgical Consultants, Evansville, Indiana
T S’s video of wife’s surgery progress 5/28/2015 in Indonesia by Brig. General Djoko Riyadi, MD Department of NeurosurgeryGatot Subroto Hospital, Jakarta Indonesia Video: https://www.storehouse.co/stories/v13tx-epidermoid-brain-cyst
C C, 6 yr. old daughter of Kirsten Forsberg Cunningham, Mass. 6/3/2015 Drs. Barker and McKennas, Mass. General Hospital
Dr. J C, Singapore (2 surgeries) 6/2015 Wai-Hoe Ng, MD, National Neuroscience Institute, Singapore
M M, Oklahoma, (4th surgery) 6/ 22/ 2015 Michael Sughrue, M.D., OU Medical Center in Oklahoma City, OK
R D, Texas, 6/24/2015 Dr. John Day, UAMS Medical Center, Little Rock, AK
P P, Michigan, US (6 surgeries ) brother of EBTS members J PFronabarger and F P7/9/2015, Dr. Fukushima and Dr. Zomorodi, Duke/Raleigh Hospital, Raleigh, NC
Z K, Scotland 7/9/2015 Mr. Taylor, Southern General Hospital, Glascow, Scotland
M H Lister, Texas, US (3rd. Surgery) 7/27/ 2015 Dr. Jeffrey Cone, Amarillo, TX
T M’s Husband, Michigan 8/12/ 2015, James P. Chandler, MD Northwestern Memorial Hospital, Chicago, Illinois
D K, Camp Lejeune, NC, son of member A K, Virginia, 8/27/2015 Dr. Matthew G. Ewend UNC School of Medicine, Chapel Hill, NC
M M, Florida 8/28/2015, Melvin Field. MD Florida Hospital Neuroscience Institute, Winter Park, FL
M R, Minnesota 9/7/2015, Jamie Van Gompel, MD Mayo Clinic, Rochester, MN
A C L, UK, 9/25/2015 at Salford Royal,UK
P C, Tennessee 9/17/2015 Dr. Kyle Weaver, Vanderbilt, Tenn
January 30, 1957 ~ February 16, 2015
Ron and Joanna Pierotti, Arizona, EBTS members joining around the time of Ron’s first surgery, were very special to long time members. Joanna, a gifted artist and writer, posted members all the ups and downs of life as Ron walked with the epidermoid with her by his side. Their heartbreaking story of Ron’s first surgery and their journey since with the epidermoid brain tumor is posted on EBTS webpage http://epidermoidbraintumorsociety.org/rons-ride-by-ron-pierotti/
On March 14, 2015, A Celebration of Life at Corona del Mar beach, in California, was celebrated by family and friends. It was a perfect day for a lovely lady. Joanna Pierotti will always live in our hearts.
EBTS members do keep on keeping on. Although some members will need a new career, others just need time and hard work to resume their careers!
Members, P R, US Marine, Texas, and D B W, Nebraska, both with past surgeries and complications, had goals to get back as before and even better. Both posted recently good advice to members to take advantage of cognitive apps, games, word searches, etc. to help with cognitive deficit. They both are, at the moment, back in school. P R is studying for a political science degree at The University of Texas-Pan American (UTPA) and Deb taking classes in social work, seeking a new career. EBTS admires them both because “it ain’t easy” as adults and especially post-surgical for an epidermoid tumor that leaves trauma to cranial nerves.
Dr. Chris Chiou, Michigan, returned back in July, 2015 to complete his last year of residency program in Family Medicine at Sparrow Hospital Lansing, Michigan.
E K, Delaware, has become an EMT, changing her career since her three surgeries and a bout of meningitis last fall, 2014.
J H, New York, on leave now following surgery, is going back for his second year of dental school.
J L, UK, is back part-time with his law career, and he tells us also of his forthcoming marriage next year.
N C M, UK, has newly launched a business, named Sea Cabin, that stemmed out of her own wedding this year. https://www.facebook.com/theseacabin/photos N C M handmade all of her wedding décor. She posts that she is taking knot lessons, a sort of apprenticeship in her spare time with an old sailor who wants to teach her all the historic knots to pass his knowledge on. She is excited about learning these old traditional knots.
R D,Texas, enters the 9th grade this fall after having surgery in 2015. R D graduated from the 8th grade this year and was 5th in his class. Congratulations R D!
I wish I could figure this out!
I really wish I could!
I do, I do!
EBTS member, Jack Eadon is back from his mission…
In 1978, an MRI found a large epidermoid tumor in Jack Eadon’s brain. Since that time, he has had four brain surgeries, but improving technology didn’t catch up until the fifth surgery on August 17, 2010, when a top neurosurgeon, Dr. Fukushima, finally totaled the epidermoid brain tumor.
Because of resulting trauma to cranial nerves in the brain stem, in particular these six neurological controlling nerves, that provide the innervation for both swallowing and speech, Jack has not eaten normally in over five years. His intake of nourishment has only been liquid food through a G-Tube.
- CN. V The Trigeminal Nerve
- CN. VII The Facial Nerve
- CN. IX The Glossopharygeal Nerve
- CN. X The Vagus Nerve
- CN. XI The Spinal Accessory Nerve
- CN. XII The Hypoglossal Nerve
Never one to give up, Jack has taken therapy since 2010 to be able to swallow again. His latest therapy was a trip to New Zealand to have dysphagia evaluation and treatment by a highly recommended team at Eats Clinic headed by Dr. Maggie-Lee Huckabee. Jack, a prolific author who writes a good story, sent photos and reports back to EBTS daily of his hard work with the Eats Clinic Team. Tests seemed to be going well, but on Day 8, the morning session was stopped because the upper esophageal sphincter would not relax.
Jack was advised that unless this esophageal sphincter relaxed, there was nothing that could be done by Eats Clinic to make him swallow. Plans for staying longer at Eats Clinic were halted. Jack commented that he felt the trip was useful, and that he did manage to get feedback gaining information from tests. There has been progress. Five years ago, he couldn’t walk, talk, or swallow. Now he can walk, sorta talk (his own words), but haven’t yet swallowed, though he think he’s getting close. He never gives up! In fact, Jack’s going to make it! For more about Jack’s life, go to link: http://blogcritics.org/%20interview-jack-eadon-author%20of-got-to-make-it/
We are partners with Amazon Smile. So, if you shop Amazon, go to https://smile.amazon.com/ look for our organization and shop. Do this each time you shop Amazon and it adds up! Look for Jack’s early book, “You Got to Make It”, sold at Amazon.
A huge “THANK YOU” to J L, UK, who posted a thank you to EBTS that made the administrators’ day. J L speaks from his heart and gives input that just maybe, EBTS’s mission is being accomplished. J L posted on EBTS Facebook on May 25, 2015, the nicest comment. “Can I just say that I think you are a fantastic charity. I live in England and have an epidermoid brain tumour. I wish there was a similar organization in England who specializes in the epidermoid, as I do feel quite isolated. I have learned more about my condition through yourselves, rather than any organization over here. Thank you.”
EBTS member, J L’s, UK, surgery was on 2 September 2010, removing 75% of his tumour. J L is now back at his law practice part time, although he remains tired and forgetful. Every day he tells us that he attempts to complete sudokus and crosswords to keep the mind active. He sets little goals and ticks them off when he reaches them. He has volunteered and raised money for charity. He has made new friends. Next October, he ticks off his (second) biggest achievement . . . he is engaged and will be getting married. Well done, J L!
The year of 2015, EBTS dedicates our 2nd Annual May Brain Tumor Awareness Month
to the children in our group who have challenges with the epidermoid. It has changed their young lives. Their lives going forward are not as bright due to this challenging epidermoid brain tumor. Please help us as we search for answers! There is a great need for research when you read stories like the one below.
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 a 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 true 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, playing outside with her big brother JaNiyah and big brother, Tim, waiting for the school bus in 2014 and looking at movies. And she loves her little cousins and loves being their babysitter when they are around. All in all, JaNiyah’s mother 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. 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. http://epidermoidbraintumorsociety.org/our-stories/janiyahs-journey/
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.
EBTS is making epidermoid brain research a reality
Please join us in funding research and awareness of the epidermoid tumor.
Wishing you a good Fall/Winter, 2015
And a Happy & Healthy New Year!
We now have an association with the charitable arm of the Amazon shopping website. When you shop, one half of 1 percent of your purchase can go to Epidermoid Brain Tumor Society! Simply go to www.smile.amazon.com then look for our organization Epidermoid Brain Tumor Society, click select, then shop to your hearts content, and automatically one half of 1 percent of your purchase will be given to our organization. Each time you shop make sure you go to www.smile.amazon.com. We thank you for your support!
End of May Update
“The people most highly motivated to support or to even initiate investigations of a rare condition are those personally affected and their close relatives,”
Truer words have never been spoken as these above. Epidermoid Brain Tumor Society is at a cross roads and needs your help to take the next step. Last year for May Brain Tumor Awareness month, EBTS was the recipient of a $500 grant from Fidelity Bank for research and also the recipient of donations from Fidelity coworkers of a EBTS volunteer who lobbied in our behalf for research. We were fortunate that they recognized the need for research and gave freely from their heart knowing not one sole
in this organization except their coworker, an EBTS volunteer, who was highly motivated for research and rallied her coworkers to donate to us. These amounts were all donated for specific epidermoid brain tumor research. Last year, we also had a few generous donations from our group which were given to fund research. We will always be grateful to these individuals and new friends of ours. EBTS has not spent a dime of these donated specified funds and needs to add to these amounts to boost funding for epidermoid brain tumor research.
EBTS recently has had an interest in the epidermoid brain tumor from a researcher from a renown children’s hospital who is actively researching a brain tumor now similar to ours. Dialogue has been started with this researcher and he is making inquiries for EBTS. Research is quite a long process and will not happen overnight, but we want to be ready if his research group decides to include the epidermoid as one of the researched tumors. We do not have enough funds in our EBTS Treasury to help jump start a research team as the huge organization that he is researching now did. Why a jumpstart? What is a jumpstart? A jumpstart is a grant to the researcher to initiate research for the organization to help with initial preparation. We have been informed that this is how research starts. The epidermoid is benign and rare, and is overlooked because its rareness affects only a few patients unlike the malignant brain tumors. We will always be overlooked. EBTS must advocate and find research for itself. This is happening now with rare brain tumors and the organizations are jumpstarting with success.
Our patient advocacy organization has worked for over 15 years to ensure awareness, education, and support. Now the focus is finding research and fundraising for research. And with your ongoing help, EBTS will continue its mission of support for the epidermoid patient and their family. In these 15 years, this patient advocacy group with few members have come a long way with many roadblocks but finally we reached the point our membership is growing and can finally have an impact to secure research funding for this devastating brain tumor. We are already close to halfway to our goal of $10,000! Consider joining with us with your donation today! Every dollar counts! www.epidermoidbraintumorsociety.org/donate
The work EBTS does is important to patients and their families such as:
1. Our EBTS webpage with its 101 Epidermoid Basics gives facts and information about the epidermoid. On our webpage one will find resources, questions, videos, surgical topics and complications about the epidermoid.www.epidermoidbraintumorsociety.org
2. EBTS members share their own personal stories for encouragement on our Stories webpage. EBTS member, Chris Chiou, MD and an epidermoid patient, writes a column, House Call, with specific interests geared to our patient membership and the impact that an epidermoid brain tumor can have on one’s quality of life. The News webpage shares our semi annually Newsletter that summarizes all of our activities.
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 group 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.
Brain Injury Awareness Month
The Epidermoid Brain Tumor Society supports The Brain Injury Association of America (BIAA) as it leads the nation in support of Brain Injury Awareness Month, March, 2015. The theme for the 2015 to 2017 awareness campaign is: Not Alone.
The Not Alone campaign provides a platform for educating the general public about the incidence of brain injury and the needs of people with brain injuries and their families. The campaign also lends itself to outreach within the brain injury community to de-stigmatize the injury, empower those who have survived, and promote the many types of support that are available.
Brain Injury Awareness Day, March 18, 2015
The Congressional Brain Injury Task Force (CBITF), co-chaired by Rep. Bill Pascrell, Jr. (D-N.J.) and Rep. Tom Rooney (R-Fla.), has set the date for Brain Injury Awareness Day for 2015. Awareness Day activities will be held on Wednesday, March 18, 2015. The Brain Injury Association of America participates in the annual event by assisting with planning, exhibiting, and sponsoring the reception along with other stakeholders, the National Association of State Head Injury Administrators and the National Disability Rights Network. Plan to attend to network with other national and federal agencies and to visit with your Members of Congress regarding key issues affecting brain injury.
February is Heart month and EBTS has a matter of the heart. It is our pleasure to announce two of our members’ forthcoming wedding. Long time North Carolina member, Kari Neville, is engaged to Chris Cowperthwaite and the wedding date is set for June 6, 2015. Congratulations to Kari and Chris.
First EBTS Newsletter Summary
It is time to ring in the New Year and out with the old! So let’s take a look at our year in review! We were able to seat our EBTS Board of Directors: Lee Ann Provenzano, Chairman of the Board (Michigan) with Directors: Linda Frevert, (Kansas), Kelli Buchanan Luff, (Washington), Tina Tucker, (Oklahoma), Brian Towne, (Minnesota), Brian Seibrandt, (Arizona), Kate Konnecke, (Germany), Yvette Ritmeijer, (The Netherlands), Jenifer Moreau, (Texas), Sonya Parra, (United Kingdom), Denise Isenhour, (Texas), Joyce Fay Powell, (North Carolina)
EBTS Officers are: Kelli Buchanan Luff, President, Yvette Ritmeijer, V. President, Kate Konnecke, Secretary, Brian Towne, Treasurer
Since we gained status of a 501 c 3 non-profit, in Dec. 2012, EBTS conducted their first May Brain Tumor Fund Drive with the dedication to EBTS past members who died with complications of the epidermoid brain tumor. Research was the focus of this fundraiser. We thank our members who gave generously for our first fundraising drive.
EBTS was proud to be selected as Fidelity Investments Smithfield group yearly charity project along with our first grant from Fidelity Investments. EBTS member, Melissa Soto, employee of Fidelity Investments, was instrumental in obtaining and providing the motivation for this endeavor. Without Melissa’s interest in research and making her fellow workers aware that there had been little progress ever for the epidermoid brain tumor in the research field; this fund drive would not have happened. Her workplace went to bat for her to gain funding for epidermoid brain tumor research. We thank you Melissa.
We thank EBTS member, Jack Eadon for his campaign, the Great Forest Train that he conducted on his own personal webpages. Half of his solicitations went to fund EBTS and the other half to his other favorite charity for dysphasia, NFOSD. Thank you to members who gave to this campaign.
First scientific questionnaire study to know more about the epidermoid brain tumours and particularly the neurological and neuropsychological effects was conducted through Humboldt-Universität zur Berlin and is additionally supervised by the Epilepsiezentrum Berlin-Brandenburg, Germany with assistance by EBTS member, Kate Konnecke, Germany. Data obtained will be analysed and published. We thank you Kate.
EBTS has been actively searching for a tissue depository where epidermoid brain tumor tissue from surgery may be held for research purposes to researchers around the world. Making tissue available will enhance the likely hood of researchers interested if they have available tissue samples.
Our First Newsletter was issued for 2014. There were updates about members and their personal accomplishments. Well wishes were sent to 26 members who had epidermoid brain tumor surgery in 2014 .EBTS membership in 2014 has grown to 335 members.
We count our blessings the generous support of our membership. Your support is vital for it allows EBTS to spread awareness and to inform those who are impacted by the epidermoid brain tumor diagnosis.
We look forward to 2015 to making more progress in spreading awareness and to achieving more research for the epidermoid brain tumor. We will keep working until further research provides prevention, a cure, and better treatment outcomes for those who struggle with an epidermoid tumor.
Thank you for being part of our EBTS organization and best wishes for the New Year!
. . .EBTS Team
The Epidermoid Brain Tumor Society (EBTS) is pleased to announce a 2014 grant from Fidelity Investments to further epidermoid research. With this grant, EBTS will explore research for the epidermoid brain tumor to understand more about the rare and congenital epidermoid brain tumor that has historically received very little research in the medical field. Gaining a better understanding of the many unknowns about this threatening brain tumor that impacts the patient’s life will continue to be a major goal of EBTS.