I met my husband Johnny in August 2010…  9 months after he returned home from being discharged from the US Army. Now a decorated Purple Heart Soldier with injuries sustained in Iraq during his deployment; I was in a whole new world. Not only did I now have this wonderful man in my life, I was also instantaneously a new mother to two-year old Lily! Johnny has since made me a mother two additional times over, and in the last 6 years we have grown our family to 5 with the addition of Jonathan in 2011 and Carly in 2015. Johnny also has another daughter from his previous marriage, Madilyn, who is almost 10 years old.

Johnny enlisted in the US Army right out of high school in June of 2005. In October 2008, after his training at Fort Leonard wood, Missouri and Fort Benning, Georgia, he was deployed to Camp Liberty in Baghdad, Iraq. On February 25, 2009, the unimaginable happened – his convoy hit an IED roadside bomb. Johnny was driving a military vehicle with 2 other soldiers on board when the explosion occurred, sending the copper explosive from the opposite side of the road toward the vehicle, striking near the front driver side tire and penetrated through the steering column. This detonation of the bomb gave him a few burns on his arms, several pieces of shrapnel in his right leg, over half of his hearing in both ears was gone, and he came close to having severed his right index finger. When the explosion happened, Johnny’s head jolted to the left striking the window of the vehicle. While he sustained no concussion at the time, his head did crack the bulletproof glass from the impact. His injuries were treated and he quickly returned to duty and fulfilled his deployment obligation, returning home in October 2009. He was then honorably discharged late November 2009.

When Johnny returned stateside, he needed to learn and adjust to his new civilian life. No longer needing to be a soldier, but a father and husband. Learning to hear again with the assistance of hearing aids, arthritis in both hips and both knees (from a previous Army injury in 2005), problems sleeping and many other issues that accompany a war time combat veteran. Johnny has been able to cope with most of his injuries well, all except the HEADACHES. Over the last several years I have sat back and watched Johnny go downtown to the Houston VA Hospital time and time again. Seeing doctor after doctor, then another ER trip, followed by bloodwork, back to his primary care physician, only to request more bloodwork, and even once he received a referral to neurology. But we always got the same answer… they could not find a solid diagnosis to link his symptoms to other than saying he had chronic migraines or arthritis in his hips. The doctors would occasionally prescribe a migraine medication or narcotic pain killers to assist with their conclusions. Most of the time, he refused the medicines and told the doctors on multiple occasions that the prescriptions did nothing to ease the pain he feels. Finally, about 6 months ago Johnny went to the doctor for another ailment -strep throat- and was greeted by another new face. Another new doctor in his primary clinic. Dr. Megan Maddox. Upon her initial examination and asking lots of questions, reviewing his chart and medical records; someone was finally hearing him. Dr. Maddox suggested that he be sent for both a CT scan and a MRI as soon as possible and we could go from there. The CT scan was easily completed, but the MRI took several attempts. On January 24 of this year, after having to go under general anesthesia, the MRI was finally completed. THE NEXT DAY Dr. Maddox called with her preliminary diagnosis. Arnold Chiari Malformation. Her suggestion was a follow up/referral back to neurology as soon as possible. After that phone call, we immediately began researching and reading everything we could find… and Dr Google was no relief to our anxiety. This was scary! What did Chiari Malformation mean for Johnny’s future? What does this mean for his health and long term well-being? Would I lose my husband, my partner and best friend? The provider for my family and father of my children. Would he be able to continue working in the oil and gas industry that he has grown to have a passion for over the last 5 years? We had so many questions to ask, but we would have to wait. The upcoming weeks seemed to pass very slowly for us. We continued to read and research what we could, and I found a support group with others who also have Chiari who gave us some insight to what others experience with the same diagnosis. Two weeks later Johnny got to meet with a neurologist who confirmed Dr. Maddox’s diagnosis and he stated that Johnny has a 7mm decendence/herniation of the cerebral tonsil down into the spinal column. Basically, what this means is that the bottom of Johnny’s brain is being pulled down 7 millimeters toward the base of his neck by his spinal cord causing pressure and pain to his entire brain. This is why no standard medication could treat any pain that he had been feeling. The neurologist then referred Johnny to be seen by a neurosurgeon and said that those doctors would provide us with more information on figuring out our next step. On March 8, I accompanied Johnny down to the VA Hospital to meet the surgeon. Upon his review of the MRI scans he stated that he agreed with the neurologists’ diagnosis of the Chiari Malformation, but he found something else that could develop into an even bigger issue. Looking down from the top view of the MRI scans, the surgeon noticed that the cerebral tonsil had moved down far enough and in such a way that a section of the spinal cord on the front side has an area with approximately 50% blockage of spinal fluid to his brain. When this fluid is obstructed, it can eventually lead to form a syrinx (or fluid filled cyst). Over the long term this can lead to deterioration of the neurological body functions like nerve damage and may disrupt the lower cranial nerves and impair motor functions.

Thankfully, Chiari Malformation can be repaired through “Decompression Surgery”. The neurosurgeon will make an approximately 4-inch incision in the middle of the back of the neck upwards into the hair line. Spread apart the muscles and lift them off the bone. Then preform a sub-occipital craniectomy (removal of the lowest part of the base of the skull) and expose the thin membrane covering the brain/spinal column. Sometimes this removal of bone is enough to relieve the pressure and then the incision can be closed. (if needed the cerebral tonsil may need to be reduced) Johnny will need to stay overnight in ICU for monitoring and will be discharged after a 2 to 3 night stay in the hospital. Overall approximated recovery time is about 6 weeks.

Gratefully, because of Johnny’s military status, all his medical expenses are covered 100% by the VA Hospital. Unfortunately, this is where his coverage ends. While Johnny can elect to participate in his company’s FMLA to protect his position until he can return to work, he has no short-term disability benefits to continue to provide an income to our household while he is recovering. And during this time his ability to move around or lift anything above 5 or 10 pounds will be extremely limited.  While I do maintain a part-time job, I am unsure of the level of care he will need during this time, along with fully caring for our 3 children. We are asking our family and friends to aid us during this time of need to help ease the financial strain we have until Johnny can return to work fully healed and healthy – without the pain he has endured these last few years. We thank you from the bottom of our hearts.

-          The Cunningham’s – Johnny, Alisha, Madilyn, Lily, Jonathan & Carly