Who’s that Masked Lady? Why its Karen!

Moids Karen Spillson Mask photoWho says you can’t look glamorous after brain surgery?

Recently EBTS member Karen Spillson, from Indiana, celebrated 35 years of a marriage and stated, “How can this be, I am only 39 years of age”.  This is a typical statement by Karen, as she enjoys life, and stays young and cheerful in spite her medical history and generally coping to live as normal life as possible.

Karen and Mark became parents at the age of 17 and 19 with their first child, later there were two more biological children. And then there were five.   Karen and Mark’s last two younger children were adopted.  Karen’s nephew was adopted at 5 months.  He had been in foster care since birth being drug addicted with a mild case of fetal alcohol. Then Karen’s youngest brother died suddenly in June of 1995. He was sole custody of his 5 year old son, and after his death, the next day; Karen and Mark went to an emergency court and were awarded custody of his child giving him a home.  Both of these adopted children have challenges with learning difficulties and one has attention deficit hyperactivity. Karen and Mark did, what most would have done under the circumstances, but Karen is not just anyone else. She was diagnosed with a brain tumor in 1995 just before the last child was adopted. Karen along with Mark placed first a priority on preparing a home for these special needs children before her own medical problem. Karen, with Mark’s full support, accepted the responsibility of caring for these little boys, and never looked back.

In 1995, Karen was in an automobile accident and had an MRI on her neck.  The radiologist by chance saw something else and ordered another MRI.  Karen commented that all she could think while lying there alone crying was that she had brain cancer, and was going to die!  She had five children ages 2-14, and who would take care of them. Later that day, a nurse from the orthopedics office called to tell her she had an arachnoid cyst in her brain.

A few months later a neurosurgeon at Cleveland Clinic diagnosed the tumor as an epidermoid.  After consulting with neurosurgeons at major medical centers all over the country including the Chief Neurosurgeon at Mayo Clinic, she was told by all; the epidermoid brain tumor was wrapped around the brain stem and was too much of a risk for surgery. The brain stem is the most dangerous and complex location of any surgery.

Karen gave up seeking help.  Reconciled, she had a family to care for and also her own studio photography business, her life continued as before. Then the seizures started.  She was having 3 to 5 seizures a week, and states between the tumor and seizures, her memory became a bigger problem than before.  She has no recollection of many events in her life, even the birth of one of her children, 16 years before the seizures started. The seizures could not be controlled.  With help from her neurologist at Loyola, new medication was started and the seizures decreased.  Finally there were 6 months without a seizure.  She had not driven for over five years and could start to drive again.  At the age of 46, mom of 5 children, this was the greatest news to be independent again!

In 20l0, her neurologist watching tumor growth, pushed her to go back to Mayo Clinic for another consult and was told yes, this neurosurgeon could do a resection but she would lose hearing, and there would be significant surgical risks.  Karen admitted that this neurosurgeon had only performed two other epidermoid surgeries, and this made her apprehensive.  With this information from Mayo, she thought that if she had one other opinion for surgery, after eight neurosurgeons had told her that it was inoperable, she would consider removal. Soon Karen found the Epidermoid Brain Tumor Society online and readers now know the rest of the story.

Consulting in 2012, with Neurosurgeon Dr. Takanori Fukshima of Carolina Neuroscience Institute, she knew she had found the neurosurgeon with the expertise,  that gave her the confidence she needed to have surgery. He told that her tumor was very big and spread out, she would need two surgeries.  “He was confident he could remove it all, but most likely with two surgeries”,  Karen remarked, and with a big smile on his face Dr. F. told her,  “This would have been much easier if you came to see me 10 years ago”!  After 17 years of waiting and watching, Karen scheduled her first surgery for August 9, 2012, and later her second on August 9, 2013 she says “just for the fun of it”!  The recovery after the first surgery was long and painful.  She was strong after a few months of PT and OT.  Second surgery was a breeze for her.

Her life now is free from the day to day seizures and approximately 98% of the epidermoid is removed. Recently, she was happy to announce news from Dr. Fukushima that her residual tumor is stable compared with last MRI.

Karen continues to love life, with her usual sense of cheerfulness and sense of humor!  Karen is one of our most appreciative members in her praise of her neurosurgeon.  She now speaks well of Dr. Fukushima accomplishments with her large complex tumor, and his skill and experience as a skull base neurosurgeon.

Being a photographer and as a way to express her gratitude to Dr. Fukushima, she had the idea to collect photos from Dr. Fukushima’s EBTS member patients to make a photo collage for him. This collection took time and many emails to members, but she was on a mission.  When completed, she received a reply with a snapshot showing Dr. Fukushima with her photo collage along with a statement from Dr. Fukushima’s office manager that he loved it!  This photo collage is placed on Dr. F.’s office wall among distinguished awards and citations from prominent medical schools, Neurosurgeon Societies, major medical centers around the world, VIPS and even a signed certificate from the Pope.  Karen’s EBTS members’ collage creates as much attention as all of the other high profiles photos. Well done, Karen!

Moids Karen Spillson and Dr Fukushima