Head Strong
Despite dozens of surgeries, Jayme McCoy finds plenty of reasons to remain positive
JAYME MCCOY is a Texarkana native with an extensive medical history, a positive attitude and a heart for service. In 1999, Jayme was a senior at Texas High School. She was playing volleyball when she fell to the ground in the middle of a play and hit her forehead.
“They did the concussion protocol and said I did have a concussion, but they thought that was the only issue from the fall,” Jayme said. “But I started having headaches every day.” She saw several doctors locally and tried many different medications to help alleviate the pain. Ultimately, she was referred to a neurologist at Arkansas Children’s. She completed several tests and was diagnosed with chronic migraine syndrome.
In 2001, Jayme was still suffering with migraines when a local doctor helped point her in the right direction. He recommended she visit Baylor Scott & White Clinic in Temple, Texas. There, Jayme was diagnosed with pseudotumor, which is caused by increased pressure on the brain.
She was scheduled to have a shunt placed. However, it was going to be a three-to-four-week wait and Jayme was still in pain. She began having spinal tap procedures every other day to relieve the pressure.
She finally had a lumbar-peritoneal shunt placed, which is a tube that acts as a catheter to drain fluid from a specific part of the body to another part of the body. It was successful for about nine months, then the headaches started again.
Unfortunately, her physician was no longer seeing patients with her condition and Jayme had to start her physician hunt all over again.
“No one wants a problematic shunt patient,” Jayme said. “My shunt had quit functioning, and I was back to daily headaches.”
Jayme continued to live her life as best as she could with her symptoms.
She struggled with going from an active lifestyle and working out to having a strict workout routine. “I tried to live life as best as I could,” she said. “Some days the headaches were debilitating, but you just do what you can.”
I
would do anything to help another person not have this kind of pain. ... fix
it for somebody else. if I die trying, then I at least tried.
She relocated to Little Rock to attend college and in 2003 found a neurosurgeon that agreed to see her. She had her shunt replaced, but the headaches continued.
“The doctor couldn’t figure out why I was having headaches again. Then he asked me ‘has anyone ever talked to you about your Chiari malformation?’’ Jayme said. “I had no idea what he was talking about.”
Chiari malformation is a condition in which brain tissue extends into the spinal canal and usually occurs when part of the skull is misshapen, pressing on the brain and forcing it downward.
The physician recommended placing an additional but different type of shunt, a ventriculoperitoneal shunt. After multiple placement attempts, her body rejected the shunt placement. Finally, the physician had to do a different procedure. He removed a portion of Jayme’s skull that measured about 4 centimeters by 4 centimeters. He replaced that portion of the skull with a mesh plate to help relieve the pressure. The relief was short lived.
“My brain had been so compressed in my skull that in just a few weeks, it had filled the space. So I was right back to having headaches again,” she said. “That procedure should have fixed the issue, however, it didn’t.”
Jayme had become accustomed to life in the hospital and doctor’s offices. In a two-and-half-year span, she had 27 shunt revisions. “I got to where I was having a shunt placement or revision on a Friday and I was out of ICU and back at work by Monday,” she said.
In 2011, her neurosurgeon moved out of state. Jayme thought she was back at square one again. But he found her a physician at University of Arkansas for Medical Sciences named Erica Peterson who agreed to take the case.
“She is phenomenal,” Jayme said. “She had all these great ideas and things to try.”
Erica replaced both shunts and Jayme found relief for about a year. When her headaches started again, they relied on multiple medications to help her get through the pain.
“I couldn’t hold my head up. I had to always keep my chin down because if I put too much pressure on the back of my neck, it felt like the roof was going to blow off my head,” Jayme said.
In 2012, she had an occipital nerve stimulator placed to help with the pain. This device sends mild electrical impulses to stimulate the greater occipital nerves, which are located at the back of the head just above the neck area.
In 2013, Erica suggested a risky procedure, cranial vault expansion. With only a 23% success rate, Peterson required Jayme to attend multiple education sessions including psychiatrists and meetings with her family. She wanted to be sure that Jayme was fully aware of the risks of the procedure.
“Once she did the procedure, she said my skull was 4 centimeters thick and it is only supposed to be .5 centimeters thick,” Jayme said. “I also had bone growths on the inside of my skull as well.”
Erica completed the procedure and Jayme’s symptoms were relieved for more than a year. At the end of 2014, Erica had presented an idea to Jayme that could change her life. She told Jayme about a clinical trial in Germany that had worked on patients with neck and back pain.
Erica flew to Germany and met with the physician that oversaw the clinical trials. After much discussion and review of Jayme’s case, Erica was given permission to complete the trial with Jayme.
“Basically, they used the same stimulator and reprogrammed it using burst stimulation. It worked phenomenally. I have a remote with me all the time. It contains my pain diary and I have full control,” Jayme said. “She did this on another patient as well with the clinical trial.”
Jayme had to keep a pain diary for Erica along with her food intake and medication intake. Each week had a different setting so that Erica could assess Jayme’s pain.
“To me this was all worth the 23% success rate that I was given. I would do anything to help another person not have this kind of pain. That is why it was so easy for me to sign on that line for this clinical trial,” Jayme said. “Fix it for somebody else. If I die trying, then at least I tried.”
Jayme has had so many issues arise during her medical journey. Since 2009, she has had 55 procedures/surgeries, 35 of which were in the skull. Her body continues to struggle with accepting the shunts and devices that are placed. She still has multiple shunts along with the stimulator and mesh plate. With every shunt revision, bone graft and doctor’s appointment, Jayme continues to see the positive.
“It’s been a crazy ride, but I have never hesitated,” she said. “I am always willing to try something.”
Jayme, who works at Genesis PrimeCare, is officially off daily pain medications and all shunts are functioning properly. She may still have headaches, but with her occipital nerve stimulator burst program in place, she does not feel headaches anymore. “People can have the same, similar problems as I have, however, they never know. If I had not taken that hit to the head, then I would have never known. Some people have just one shunt placement and they are done,” Jayme continued. “Since I have multiple problems, it has taken multiple procedures.” Jayme is in a good place now, and happy.
“I love where I work, and I love what I do. I am happy without headaches. Obviously, the Lord has something in store for me because I should not be here,” she said. “My mother told me that ‘It can always be worse.’ So, I got it tattooed on my forearm where I can see it every day. It is a gentle reminder to not waste my breath complaining when someone else could be taking their last breath.”