EBTS knows that Texas, USA, is a big state, but do all native born Texans have a big heart too? We know that Denise Snider Isenhour, a native born Texan, has an enormous capacity for our members’ welfare. She is always there for our members keeping them calm and getting them through their crisis. And she knows much about the epidermoid. She should since she has been a wait & watch epidermoid patient for quite a long time, and one of the early members of EBTS organization. Denise serves as an EBTS administrator and also is on the Board of Directors. She looks back and begins her story with the epidermoid.
“The first indication I had that something was “really wrong” started with exercising 10 years ago.
I was working out with a trainer, lifting weights and almost passed out. A few weeks later, I was out for a bike ride and had to get off of my bike for fear of passing out. I also had a bout of trigeminal neuralgia. Symptom was a severe tooth ache or a really bad sinus infection. My dentist could find nothing wrong, and my doctor could find nothing wrong with my sinuses. Thankfully the symptom went away, so I stopped trying to find out what was wrong.
The episode that finally started me on this journey was a fainting spell while shopping. I thought all of this meant something was wrong with my heart. I visited my primary care doctor, and he ran an EKG and EEG. Both were normal. Then I started having severe neck pain that would radiate up to my head. Going back to the doctor, thinking this pain was from stress, he asked how my marriage was and gave me a prescription for muscle relaxants. A week later, still medicated, we took our young boys on their first trip to Disney in Florida. The first day I was in pain, but manageable. The second day I was in tears with pain, and my husband rushed me to the hospital emergency. I was checked in and scheduled for an MRI and CAT scan.
The MRI and CAT scan were shocking in that both revealed I had a big problem – a brain cancer. I was informed that surgery would be scheduled within the week. Since I am a Texas girl, there was no way they were going to operate on me at this out of town location. I told them I would go home to Texas and check in at M.D. Anderson. Waging a fight, the Florida hospital said they would not release me. I was told my insurance would not cover my stay if I left. I called my insurance company, and they told me to pack up and “Get out of Dodge”. My stay and the MRIs/CAT scans would be covered. I left!
Having a neurologist back home as a good friend, I called and explained what had occurred. He told me to wait, rest, and not rush home if the pain was gone which it was. We returned home, and my neurologist had more testing done. Back in Texas, with my medical history and new MRIs, I was diagnosed with a brain tumor; an epidermoid. My neurologist also realized in studying my medical history, that in the past there had been multiple bouts of chemical meningitis from the rupture of the tumor. We calculated that I had around four since college, with two episodes sending me to the hospital.
The tumor had never been discovered because they had only done CAT scans until the last episode. After diagnosis, my neurologist set me up with several neurosurgeons in Austin, Texas. Each one said the same, “Your tumor is in a high real-estate area. We would not touch it.”
I wanted this “thing” out of my head, so I started researching the epidermoid and found EBTS. Members told me I had time to search for a skull based neurosurgeon. Reading posts by group members, with successful outcomes, many had surgery by Dr. Fukushima. I sent my MRI disk to him and within a week was scheduled to travel to North Carolina to meet him and receive an opinion. My husband and I were nervous, and thankful that we brought in a tape recorder to the consultation. The information that Dr. Fukushima told us was not the best. He told me that I had three separate tumors. Surgery would be difficult and would require two separate surgeries six months apart. He admitted that wait and watch would be the direction now unless my symptoms progressed.
Ten years of wait and watch years with not any more growth than on the first diagnostic MRI is where I am now. The results of my yearly MRI are sent to Dr. Fukushima. I battle fatigue and headaches along with “dizzy days”. Thankfully after a day of rest, the symptom goes away, and I continue life “almost” as usual. My lesions are located in the basal cisterns ventral to the brainstem. One is attached to an artery and the other is close to another. My swallowing and hearing nerves are involved.
Some find that knowing of this brain tumor is a curse. I have chosen to look at it differently. I have found it to be a blessing. Each day is a gift, and I have learned a few things along the way. 1. A perfectly clean house is not as important as spending time with my family. 2. Do not remain silent about your feelings. Most importantly, I trust God and have a stronger faith than ever before. God and family are what drive me now. Friends have come and gone, and a few have stayed the course. It has been difficult for them to see that there is something wrong when I look normal on the outside. And too, the epidermoid is a benign brain tumor, yet this label is a misnomer when the location of the tumor is the skull base. Symptoms from this tumor with pressure on nerves in the skull base can be incapacitating. There has been little understanding when I have had to cancel lunch dates or going out with the girls because I am just too fatigued or have a bad headache.
Other than my family and God, there is one other constant in my life. This is the Epidermoid Brain Tumor Society. EBTS has been a light in the darkest moments of my journey. I have had answers and advice from EBTS members sharing their personal experience enabling me to feel less alone or isolated with my diagnosis. The epidermoid is congenital and rare, and only a little more than 1% are diagnosed of all brain tumors in a year. To be able to converse openly and honestly about my emotions of coping with a chronic illness with someone that understands is helpful. I have bonded with very dear friends along this journey through this group . . . another blessing! Without the epidermoid brain tumors, I would have never known these genuine, supportive people.
The EBTS organization brings together people facing similar issues, and one finds out that members are all in the same boat. Being in the same boat, gives numbers which can make an impact. Alone does nothing; but together creates a group with a purpose. EBTS is dedicated to raising epidermoid brain tumor awareness, and funding for epidermoid specific research.
Your support and my support, along with other members will make a difference in eradicating the epidermoid brain tumor.”
February, 2015 Denise Snider Isenhour