PATIENT STORY: Clival Chordoma
by Amy Eisenberg
As I approach the Thanksgiving holiday, I am eternally grateful for Dr. Daniel Kelly, Dr. Garni Barkhoudarian, Dr. Chester Griffiths and their entire team. Because of these brilliant doctors and the staff at Saint Johns Health Center (now Providence), I am alive, healthy, strong and excited about my life. But I would not have said that two plus years ago.
On July 4, 2014, I woke up to a terrible headache. As the morning progressed I became violently ill with tremendous pain in my neck shooting up to the back of my head and across my forehead. I started to get nauseous, experienced dry heaves and could barely get off the couch. I am a widow and alone in my home but fortunately, I had just enough energy to call my good neighbor, Sharyn.
Sharyn rushed me off to the local hospital emergency room. At first, the nurse suggested that maybe it was the flu or dehydration but wasn’t really sure. I told her about my tremendous head pain and before I knew it, I was whisked off for CT scans. The only thing I remember after that was laying in my bed, quite incoherent, and hearing a man tell me I had a large mass in my head. “What? This cannot be happening to me. This is a horrible dream.”
I remember this same sickening feeling from 2007 when I was told that my husband had pancreatic cancer. And now I was hearing the same horrible word – cancer. My first thought was that my beautiful, thick head of hair would have to be shaved and I would look like Frankenstein with all the incisions. I was too out of it, though, to say or do much. My son who lives in Las Vegas was by my side and I vaguely remember my assistant standing in my room and another young woman from our office.
After that, I remember being transported in an ambulance to another local hospital where I would have an MRI. Everything was a blur after that until my younger sister, who drove to Las Vegas from California, took me home. I was a very sick woman. And I was very scared.
My sister, Gina, had a long-time good friend who lived in California and had been in the medical field for decades. Gina, called her right away. Her friend, Patricia, told Gina of a wonderful surgeon who she assisted several years ago. His name was Dr. Daniel Kelly. She said he was a maestro! My sister pursued finding Dr. Kelly and had my MRIs sent to him. Within a day of sending my scans, Dr. Kelly called my sister and talked about my dire situation. Dr. Daniel Kelly said I had a rare brain tumor called a clival chordoma. A clival chordoma is a slow-growing tumor and about 1 in 1 million people are diagnosed with this annually. Of course, leave it up to me to have a very rare brain tumor.
We learned that Dr. Kelly was one of a handful of surgeons who performed endoscopic endonasal surgery (through the nostril) for brain tumor removal. I was thrilled to hear this news. No shaving of my hair; no incisions in my head and no scars. Believe it or not, this was good news for me. But little did I know I had a long road ahead. About a week after being diagnosed, my sister Gina and my son Brian drove me to Santa Monica.
Once I arrived at Saint John’s in the late afternoon, I was checked out by the medical team. They were concerned by how I was acting and looking. The next day, I went through the necessary pre-op tests and thought I was all set to have surgery that very week. However, the results of my blood work were not good. I was told my surgery would be detained because I was very sick and they could not operate until they figured out what was wrong. It was not the tumor. After 3 days of going through numerous tests, Dr. Kelly and his team diagnosed me with bacterial meningitis. They determined that my tumor was so large it was pushing against my sinus thus creating an infection. More bad news. Every day I waited to hear the doctors’ analyses of where I was and when I might be able to have my surgery.
Although this was the most horrific experience of my life, I could not have been in better hands and in a better place. I felt blessed. Dr. Kelly kept re-assuring me that he would figure everything out and that I would be well again. There was never a doubt in their minds that they could help me, which made me feel secure. The entire time I was in the hospital, I was treated with great care, concern, compassion and love. I knew, deep in my heart, that I was in good hands. Even the nurses at Saint John’s would tell me, “You are so lucky. You have the best surgeon. People come from all over the world to see Dr. Kelly.” Wow!!
The days slowly passed as we waited for my body to be strong enough to tolerate the surgery. I was starting to get anxious and wanted to just have the surgery. I tried to make the best of each day. Fortunately, I have an amazing family. Several flew in from Ohio and Michigan and stayed with me until after my surgery.
Finally, after 10 days of waiting for the big chordoma surgery, I had a 10 hour operation with great success. Dr. Kelly and his team were able to remove about 90-95% of the tumor. The only part of the tumor that could not be removed was located on the brain stem. I was very happy!! I did have some post-surgery issues like intensive care psychosis, which was also horrifying and scared the life out of me. But once that passed, I was on the road to recovery. After my surgery, I stayed in the hospital for 4 more days and then had to recuperate for a few weeks in California mostly because of the bacterial meningitis. I passed with flying colors and was finally able to go back to Las Vegas. While I had a long road ahead of me and my sister lived with me for 4 months to help me recuperate, within 6 weeks of this major surgery, I was boarding an airplane to give an important speech at the Bill & Melinda Gates Foundation. I am a professional speaker and I had this event booked months prior to learning of the clival chordoma. My sister had told Dr. Kelly and his team prior to my surgery that it was extremely important I make that speech. Dr. Kelly told Gina that yes, I would make it! Even though I couldn’t lift a suitcase or bend my head, with the help of my executive assistant, I was able to travel from Las Vegas to Washington State and speak for several hours to over 150 people. By the following February (2015), I felt just like my old self and even more enthused about life because I could truly appreciate the beauty of being healthy every single day—every single moment.
Dr. Kelly and his team will be watching me for the rest of my life which is a bit strange to me because I feel fantastic. In my mind, I am healthy and strong and living life to its fullest. I am a career woman who loves her work and I have my own business. I am a mother and grandmother. I have a wonderful family and very supportive community in Las Vegas between my neighbors and my church. I live a full, active life all because of Dr. Daniel Kelly and his team plus the knowledgeable, caring staff at Providence Saint John’s Health Center. I am comforted to know that Dr. Kelly and his entire team will be there should I ever need them in the future.
November 19, 2016
Las Vegas, NV
About the Author
Amy Eisenberg, MSN, ARNC, CNRN is the program nurse practitioner and clinical fellowship director at the Pacific Neuroscience Institute. Her clinical responsibilities support the efforts of the neurosurgery and neuroscience teams. In addition, she coordinates the Clinical Fellowship Program and the Neuroscience Nursing Symposium.
Last updated: November 17th, 2016