Multiple local agencies are partnering to save the life of a young man living more than a thousand miles away.

Honduras Man Receives Life Saving Surgery

OKLAHOMA CITY (July 11, 2017) – Multiple local agencies are partnering to save the life of a young man living more than a thousand miles away. Twenty-eight-year-old Gustavo Adolfo Sierra Santos lives in Honduras, a republic of Central America. He has lived with epileptic seizures for most of his life.

Epilepsy is a chronic disorder that causes unprovoked, recurrent seizures. A seizure is a sudden rush of electrical activity in the brain. Such electrical instabilities can cause a wide range of issues from brief lapses of attention or muscle jerks to severe and prolonged convulsions.

Epilepsy is a fairly common neurological disorder that affects 65 million people around the world. A good majority of them, nearly 90 percent, live in developing regions like Honduras. However, the United States is in no way immune. Approximately three million Americans have epilepsy and it is estimated one in 26 people in the United States will develop a seizure disorder at some point in their lifetime.

Although there is no cure for epilepsy at this time, the condition can be successfully managed. Treatment with medications or sometimes surgery can control seizures for about 80 percent of the people living with the disorder.

In Santos’ case, he received a vagus nerve stimulator implant 13 years ago. The vagus nerve is part of the autonomic nervous system, which controls functions of the body that are not under voluntary control such as the heart rate.

Vagus nerve stimulation, or VNS Therapy®, is delivered through a device that is surgically placed under the skin on the chest. The device sends mild pulses to the vagus nerve at regular intervals throughout the day in an effort to stop seizures before they start. The VNS device is sometimes referred to as a “pacemaker for the brain.”

For Santos the device dramatically improved his condition and quality of life, until about five years ago when the device stopped working. Since then, his seizures have continually worsened. Despite taking multiple medications three times a day, he is now experiencing 3 to 4 tonic-clonic seizures a week. This type of seizure (also called a convulsion) is what most people think of when they hear the word “seizure.” An older term for this type of seizure is “grand mal.” As implied by the name, they combine the characteristics of tonic and clonic seizures. Tonic means stiffening and clonic means rhythmical jerking. Such seizures are very hard on the body and can even be life threating. Uncontrolled or prolonged seizures can lead to brain damage. Epilepsy also raises the risk of sudden unexplained death.

Sudden Unexpected Death in Epilepsy is the sudden, unexpected death of someone with epilepsy, who was otherwise healthy. With SUDEP, no other cause of death is found during an autopsy. It is the leading cause of death in people with uncontrolled seizures.

Santos’ father, Santos Gustavo Sierra Ordonez, lives in Tulsa, Okla. While he can afford to bring his son to the United States to have the device replaced, he does not have the means to pay for the surgery itself or the medical charges that will follow. For this reason, he contacted the Epilepsy Foundation of Oklahoma to see if they could help in some way. Jenniafer Walters is the executive director. “We don’t usually do this sort of thing but given that in Oklahoma last year we lost 20 children to Sudden Unexpected Death in Epilepsy, I felt compelled to help out. I fear for this young man’s life considering the state that he is in and living with this first hand, having a daughter who has epilepsy, I understand what this father is going through.”

Walters reached out to LivaNova, the company that manufactures the VNS device. They agreed to provide the replacement free of charge. She then shared the Santos story with representatives of INTEGRIS, who agreed to waive all hospital fees. INTEGRIS then engaged the Diagnostic Laboratory of Oklahoma. They will be covering the lab costs.

Salman Zubair, M.D., with St. Anthony Hospital, will conduct the required pre-surgery neurological evaluation; Perry Santos, M.D., M.S., from the Otologic Medical Clinic, will perform the surgery; and Michael Kutner, M.D., of INTEGRIS, will be the anesthesiologist. All three physicians agreed to offer their services on a pro bono basis.

Through an interpreter at the Epilepsy Foundation’s corporate office, the Santos family sent this message to all of the organizations involved. “We are so very thankful for the generosity being offered to our family. True compassion has the ability to reach across borders and break down barriers. In this case, kindness really will save a life. And who knows, by raising public awareness of epilepsy, our story could quite possibly save more lives than we will ever realize.”

The surgery will take place July 18 at INTEGRIS Baptist Medical Center in Oklahoma City, Okla.