Sometimes the Sound of Hoofbeats are from Zebras
If all I had was one last prayer I’d pray it because I know You’re always listening. – Casting Crowns
Article written by Alex Blackwell. Connect with me on Facebook.
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.
Stuck nowhere
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.
Missed opportunities
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.
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Comments
34 Responses to “Sometimes the Sound of Hoofbeats are from Zebras”
What do you think?
I will be thinking of you, Mary Beth and your whole family as you go through this!
[...] View original here: Sometimes the Sound of Hoofbeats are from Zebras [...]
Thank you Mary Beth for not giving up! We will have u in out prayers everyday. And thank you Alex, for reinstating my belief that LOVE heals all..
Your story is yet another testament to the powers of love. Your reunion is a blessed inspiration to any of us who have decided parting company is the solution. Having a fresh commitment had to have been an example of love in action blessing to anyone within your news.
“In sickness and in health,” is something we say, but don’t really plan to have to experience. Your reminder of what you are experiencing and facing this Thursday serves to remind all of us to cherish our health, our families and to be aware how fragile life can be.
I offer prayers of guidance to the team of medical partners in this procedure. I offer prayers of support for you individually and collectively. And I offer gratitude for having the opportunity to read your stories.
All the best of luck and wishes to you both in this trying time. My prayers are with you.
I will keep you in my prayers and thoughts. Sending strength your way.
Thank you for sharing your story … it is so moving because you two seem to have what couples dare to achieve.
I pray for Mary Beth, you and your family, the medical team performing the surgery, and all the people who have been part of her life.
May you find strength through all this, and to keep your faith, knowing that all is well.
blessings,
Belita
You and Marybeth are in my thoughts and prayers. I just have a feeking it will all be positive ( an intuitive feeling I felt in my body as I read this.
I had serious brain surgery as a teenager I fully understand your concerns.
sending you, Marybeth waves of love and healing
Namaste
Suzie
I will be praying very, very hard for you and your wife. Be strong.
Kevin
God Bless you all!
I am glad to hear that you and Mary Beth were able to find an answer. The key really is in not giving up. I will definitely hold you both in my prayers and pray for Mary Beth’s healing. Please do let us know how the surgery goes.
- Varsha
Good Luck to you and MB!
Sending some love to you guys. Good luck with it all. I don’t know what else to say.
What the medical profession can get up to is unbelievable. They play around with our lives because they cannot be bothered to think that they could be wrong.
All the best. Loving wishes to your wife and the whole family.
I am sending healing thoughts and prayers to you and Mary Beth.
Much love, Jenny
Best wishes to you both, so glad to hear resolution is coming your way MB. Thinking of you from the other side of our world, in Australia. Rise above the prejudice, be strong and stay safe.
@ All: It’s early on Memorial Day (Monday) here in the United States and as I read the comments you left for Mary Beth I’m overwhelmed with your encouragement and support. Thank you very much for being such an important part of our lives. God Bless.
Alex
Reading this just makes my gut so tight and it makes me cry. I’m glad you had the courage to keep searching even though the frustration of prejudice could have shut you down completely. I have shared your concerns at church, requesting prayer for both of you and your children through this most difficult time. Personal thoughts and prayers are sent your way with love.
Becky
Best wishes Alex and Mary Beth, I hope everything turns out great.
Prayers and blessings to you both. I will put Mary Beth in the several Prayer Circles that I have access to in Hot Springs, AR.
I have had a similar experience with doctors who don’t want to look beyond the obvious for a cure.
May the God of all power pour his healing power into the surgeons who operate on you, Mary Beth. May the Lord of all strength imbue you with his. May the Jesus of suffering take your heavy load from you. May the Father of all wisdom and love fill you anew. And may the Holy Spirit brood over you, protecting you and guiding you and filling you with his peace.
With Christian love,
Mel Menzies
I am overwhelmed with the support from throughout the world for me and my family as we face a very scary day on Thursday. I will take with me the prayers and positive energy and rest and embrace the beginning of my healing journey.
Thanks to you all!
wow Alex and Mary Beth. My prayers and thoughts will be with you this week. you are incredibly strong for sharing this story. Much love to you both,
Todd
My prayers and heart will be with you both.May the Lord protect you.God bless you.
Love from Argentina
Alex and Mary Beth,
You are both incredibly brave. Thank you for sharing this – my thoughts will be with you this week.
Love Peter
Alex, your post today made me cry. Over the past few years, my own marriage went through a rocky patch and a much needed, hard-worked-for reconciliation . . . so your last post really hit home for me. So, to read today’s post was especially difficult. (I believe in a much-deserved happy ending!!) I am cheering for you and your wife this week. Stay brave and strong. You will definitely be in my thoughts and prayers. Thank you for sharing your story . . .
As a cancer survivor I have undergone 5 surgeries in the past 2 years. Surgery is always scary. I am encouraged that you have found a surgeon and doctor who you feel comfortable with. And thank you Alex for pointing out that some doctors do discriminate. Trust your bodies, you know best. If you feel something is wrong, something is probably wrong. And if you see a doctor who dismisses your symptoms as somewhat neurotic, seek a new doctor. Continue to seek until you have the answers you deserve!
Thank you also for sharing your story of the healing your marriage has received. What a wonderful blessing that you two will go through this difficult time together, supporting each other. Mary Beth, I know that the recovery may be difficult at times but you are going to conquer this. I feel it in my heart!
I will be praying for Mary Beth, for Alex and for your children. I will also pray for the surgical team and the nurses as you recover. God will be right there in that room with you holding your hand. Be assured of that!
Thanks for this post and your vulnerable share. I wish your wife a speedy recovery. Best, Chris
Alex and Mary Beth,
Our hearts and prayers are extended to you! We will activate the prayer chain.
Would you like us to come to the hospital and pray with you prior to the surgery? We often do this and would be glad to.
Regardless we will be praying. Please keep us posted.
Our love and prayers,
Belinda Kendall
Thank you for sharing.
If you choose to go within your loving heart and share your burning passion with the rest of us, many more human flowers will be happily growing and feeling at ease. A Friend is a Treasure A friend is someone we turn to, when our spirits need a lift…)All the best. May flowers always line your path and sunshine light your day…)
May God bless your family during this trying moment. May you have the faith to endure.
Dear Alex and Mary Beth, I am so glad that I continued reading all the different things you posted.I just found out about the surgery, and I am about to go to the Lord now for your healing and protection.May God Bless you both and your family as you go through this together.
I just read your amazing article and the tears are streaming so heavily I am having a hard time typing. I am so relating to the anxiety etc… I have been in pain my whole life and am 48 and have been told Fibromyalgia blah blah…bur recently found out I have Chiari and Congenital Cervical Stenosis and to rub salt in the wound my son has been having lots of problems and we just found out he inherited this from me. Will you please keep me posted on her progress. I will keep you and your wife in my prayers…please pray for me and my son. This is all so confusing and frightening…and we need 2 surgeries not just the Chiari…
would love to hear from you….
Alex, your wife Mary Beth and you seem like extraordinary people. even though I have not met you in person I feel after reading this post, I know thoroughly what amazing people your wife and you are. I will be sending out a Reiki bubble, it is on it’s way to your wife.