If all I had was one last prayer I’d pray it because I know You’re always listening. – Casting Crowns
A number of medical schools teach their students this adage, “When you hear hoofbeats think horses, not zebras.” The meaning is clear: When confronted with a set of complex symptoms consider the simplest or most obvious cause first. However, when doctors leave medical school and begin treating patients, some need to realize zebras can also be the reason for the sound they hear.
My wife Mary Beth has been hearing the hoofbeats for the last four years. My hope is the noise has not turned in to a stampede. We will know on Thursday when she undergoes a six hour operation on her brain to repair a Chiari Malformation.
An unwelcomed beginning
Four years ago we were planning our 20th wedding anniversary. This was a particularly special celebration because we had just reconciled our marriage a year earlier and were using this occasion to renew our wedding vows. We decided to turn the vow renewal into a second wedding because in many ways we were both different people and we were looking to start our married life over again.
The preparations were exciting and they were also exhausting. Working with the wedding planner, coordinating family members’ travel to Kansas City and finding new wedding rings all took a toll on Mary Beth. A few weeks after the ceremony, we left for vacation. By the time we returned home, my wife was not the same.
Her energy level dropped significantly, she had persistent headaches and experienced heart palpitations constantly. At first we just thought it was fatigue, but as the symptoms continued to grow worse, so did our concern.
Mary Beth consulted with a cardiologist, two different endocrinologists and her gynecologist to diagnose the cause of her symptoms. Several doctors thought she had a hormonal imbalance and one physician considered a vitamin deficiency as the issue.
As each possible cause was eventually ruled out, the doctors were running out of opinions so they simply stopped looking for answers. Along with the absence of medical opinions regarding her physical health came insinuations that her condition was not physiological. Many of the doctors insinuated her illness was stemming from an attention-seeker behavior that was more psychological in nature rather than trying to get to the root cause of her illness
These suggestions from the doctors were embarrassing and devastating. Some of the doctors suggested Mary Beth go on anti-depressants or take measures to manage her stress better. The innuendos were so harmful to her that she actually gave up her search for a diagnosis and possible cure a year ago. She reconciled herself to the belief that, as a 42-year-old woman, this would be the quality of her life.
At the same time of her resignation came the unexpected death of her father. Her attention turned from seeking answers for herself and to supporting her step-mother and siblings through this difficult time. Whatever energy she had left, she gave to grief and to the hope of finding some healing for everyone else. She placed her own healing on hold.
Sometime late last summer until early spring of this year Mary Beth was stuck. She became numb and disconnected from how she was really feeling. My wife became so accustomed to the headaches she would often comment that she would be surprised and perhaps even unsure how to react, if she went to sleep or woke up without one.
Our relationship became strained because whatever energy she had left at the end of the day was often not enough for intimacy or physical contact. She also began to experience new symptoms during this time such as balance and coordination problems, she would forget simple words or use words in the wrong context and in the wrong order and she started to notice numbness in her arms and legs. The winter brought some harsh, dark days to her life.
After the holidays were over, I was able to convince my wife not to give up and to start looking for some answers again. In March, a doctor ordered a MRI of her head and neck. When the results came back we finally had the answer and vindication that she was truly ill, not just imagined or fabricated as some doctors suggested.
The hoofbeats belonged to zebras, not horses.
Facing a new reality
The MRI showed a Chiari Malformation which is a rare birth defect at the base of the brain that results in brain tissue (the cerebellum tonsils — two pegs of tissue which hang off the cerebellum at the base of the brain) extending into the spinal canal.
The result of the cerebellum tonsils extending into her spinal canal creates a syringomyelia which is a cyst-like, fluid-filled cavity within the spinal cord. The syringomyelia in Mary Beth’s spinal cord is six millimeters long but will continue to grow if not treated.
The dangers associated with the presence of the syringomyelia is it doesn’t allow adequate cerebral spinal fluid to flow through her brain contributing to memory loss, eroding motor skills, pain and numbness in her arms and legs, and chronic headaches – all symptoms Mary Beth has been experiencing the last four years, but more chronically lately.
The operation on Thursday involves the surgeon opening the back of my wife’s skull to expose her cerebellum. Next, Dr. Bamber will place a synthetic graph under the cerebellum tonsils to lift and hold them back into place. The result of this procedure will be to remove the pressure the cerebellum is causing on Mary Beth’s spinal cord. With the pressure removed, the syringomyelia will hopefully begin to shrink in size. And, as a result, my wife’s health should gradually improve over time.
The reality of a six-hour brain surgery has been weighing on us for a few weeks. The decision to go forward with the operation was not an easy one. Mary Beth, after a long and exhausting search, found a doctor who has worked with several patients with the same symptoms and knew after reading her MRI that my wife’s condition was indeed serious and surgery was necessary.
Dr. Bamber has performed several of these operations. We have faith in him and he has faith Mary Beth’s quality of life will improve afterwards.
Our reality is a little uncertain right now. While we are grateful to have some answers, the risks of this surgery are significant which is creating anxiety for both of us. The next few days will be long ones. Sometimes the not knowing is the hardest to endure.
Mary Beth’s doctor believes she was born with this condition. As she has grown older, her symptoms have become more pronounced because the size of the syringomyelia has increased. There have been several opportunities for her Chiari Malformation to be discovered, but until recently, they were missed.
A few years ago when she first started having pain in her neck and arm she had an MRI to determine the cause of the pain. She was told there were no findings on the MRI that would explain the pain. Mary Beth recently asked for the results of that MRI to see if the Chiari Malformation was present then. It was. But whoever read the MRI missed the obvious traits of the deformity.
Several doctors over the past four years missed the opportunity to look deeper and beyond the obvious. There is a noticeable bias some professionals in the medical community have about women who come from upper-middle class households compared to the true severity and scope of their symptoms. Some believe there is never anything truly wrong with them other than wanting a little attention. This prejudice has cost Mary Beth.
It has led to periods of self doubt and embarrassment. The shame she experienced from the condescending reactions has been just as devastating to her as the condition itself.
I truly believe if it were me suffering from the same symptoms my wife has, I would have received the proper diagnosis and treatment years ago. Everyone, regardless if they are male or female; attractive our unattractive; rich or poor deserves to be treated with respect and dignity. Everyone deserves the opportunity to be treated from the beginning without suspicion. Everyone deserves the chance for their doctor to think zebras as well as horses.
Looking for some healing
Now with only a few days until Mary Beth’s surgery I don’t want to miss an opportunity to tell her how happy I am she didn’t give up and kept fighting for a quality of life she deserves to have back.
While the surgery may not completely restore her health, it will provide some needed healing for her body and for her mind. I know she will find comfort in both.
In looking ahead to Thursday, it’s odd how the days before then will simply feel like normal ones. We will go to work, come home and prepare dinner, celebrate the end of the school year with Andrew and Emily, enjoy Caitlin’s visit before she begins summer school and check-in with Brandon to hear about his weekend trip to St. Louis. Our children’s life, and our own, will continue as planned for a few days more.
On Wednesday we will celebrate Mary Beth’s 43rd birthday. Her brother and sister will be in town and we have selected a new Italian restaurant for the occasion. That night when we return home our usual routine will be interrupted by last minute preparations for the next morning.
Although not acknowledged, everyone will understand the unspoken. Mary Beth and I will rise early to be at the hospital by 6:00 a.m. We will complete the necessary paperwork and then she will be escorted to a place away from me.
I will be able to see her briefly before the operation begins. When I do, I will not miss the opportunity to tell her how much I love her and then I will pray for the healing that is overdue and for the healing she deserves.
Asking for help
Please keep Mary Beth in your thoughts and prayers this week and next as she begins the recovery and healing process. If possible, please add her to the prayer list at your church or place of worship.
You may also want to consider making a donation to the Conquer Chiari foundation which is a tax exempt charitable organization governed by Section 501(c)(3) of the Internal Revenue Code. Your generous contribution will help to fund research and spread awareness of this abnormality.