Hi all! During my last trip down to Monterrey I was interviewed, along with my mom and doctors Cantu, Barrientos and Dr. Rainbow by El Norte/Sierra Madre newspaper! The article was published today and I wanted to share it with you all.
Very special thanks and much gratitude to reporter Regulo Cantu, for listening my story and and helping me share my miracle with the people of Monterrey. You did a great job!
*English translation below :)
Monterrey Doctors successfully treat a young American woman who was about to die from an infection caused by the bite of a tick and that led to Reflex Sympathetic Dystrophy, a rare, painful neurologic disease, that could only be treated with this life-saving experimental treatment in Monterrey.
Jessica Stevens's story is one of hope and pride.
Talk about the fortitude of a young woman who endured two medically induced ketamine comas and her incredible parents who, despite the darkest times, never lost faith and continued to seek a solution for the strange illness that afflicted their daughter.
On the other hand, a success for Medicine in Monterrey, the only place in the world that has successfully treated patients with Reflex Sympathetic Dystrophy using this experimental treatment, thanks to the team led by anesthesiologist Fernando Cantu.
While visiting the city for further treatment, Jessica sat down with us to talk about her miracle that has happened and who made it possible.
“Something rarely seen”
Jessica Stevens was a perfectly normal teenager. She lived with her parents in
until she was 16 years old.
However, during the next nine years of her life, now 25, her strength and will to live would be put to the test every day.
In 2003, at the end of the school year, Jessica went away to a summer camp where she was bitten by a tick on the back of her right leg. After that, her life changed.
"At first my leg just felt warm, with some itching, but soon I started to feel very sick with fevers after returning from the camp. Something was not right. I had severe headaches and stomachaches, and no doctor could diagnose what was wrong, as the disease continued to progress they said that maybe it was the flu or mononucleosis. It took seven months to finally diagnose me," recalled the young woman.
As the disease worsened, she began to have painful skin lesions and pain throughout her body, to the extent that even wearing clothing became very painful to her.
"I couldn’t be touched, I couldn’t move, I was stuck in one position in bed and eventually my whole body was in burning pain, as if someone had poured gasoline on me and lit a match… I was on fire and I could not escape. Even a small breeze was very painful.”
Jessica notes that despite this, her mother, Sarah Stevens, never gave up. She took her to various universities and hospitals throughout the
States, searching for someone who could help
The doctors who saw her said they had never seen anything like it and therefore did not know how to treat it. Some doctors suggested putting Jessica into a hospice and making her comfortable. They said in this condition, she was not expected to live more than a month.
"It was a terrible time to hear all of that; I just wanted to find someone to say: 'I have seen this disease, and this is how we can fix it.'"
But that didn’t happen. Until finally, they found a doctor, who identified the disease: Reflex Sympathetic Dystrophy (Reflex Sympathetic Dystrophy), painful neurologic disease that can be triggered by any sort of injury or illness, after which the brain malfunctions, sending constant pain signals throughout the body, essentially, shutting it down.
Jessica and her parents were told that her last hope for survival was an experimental treatment in
if they wanted to try it.
They agreed, at that point they had nothing to lose.
“She came here very bad”
Here in the city, Fernando Cantu, assisted by Luis Barrientos, both anesthesiologists, had already treated 22 people who had suffered RSD like Jessica. Interestingly, most were foreign, from the
They base their treatment in a drug called ketamine.
"Ketamine is a general anesthetic, but we administer it in very large doses to induce patients into a coma for five days," said Cantu.
The Ketamine coma works similarly to shutting down and re-starting a computer, after this period, the patient wakes up and there is a 'reset' of pain receptors in the brain, Ketamine is a potent antagonist of the receptors that play an important role in 'Reflex Sympathetic Dystrophy’.
It is not approved in the
States to use this drug, in these doses, for
this type of disease. Dr. Fernando Cantu, along with Dr. Luis Barrientos spent
five years doing the ketamine coma study.
"It is a study. We can not say that it is a treatment, because there is no proof that it really works as such."
By the time Jessica arrived, Drs. Cantu and Barrientos had already been conducting the Ketamine Coma study for two years.
"Jessica came here in very critical condition. She had lived for five years in a bed, within four walls, she could not move, she could not wear clothes, she arrived wearing dark glasses because the light bothered her, she wore noise blocking earphones because she could not tolerate any sound without seizures, we could not touch her, she practically had not eaten in three years and was being fed intravenously for years before she came. Additionally, the disease had progressed to affecting her viscerally, her internal organs” Says Cantu.
Luis Barrientos remembers how bad it was.
"The touch of the sheet bothered her, and most impressive thing was seeing the extreme weight loss she had, in addition, the illness caused hundreds of ulcers on her arms and she could not move her legs at all. At that moment I thought that of the 22 cases we had seen so far, hers was by far the most serious. "
in August 2009, Jessica was not very hopeful, but felt she had nothing to lose.
“I was in so much pain, that the thought of undergoing a coma for five days didn’t bother me.”
"I know this is terrible to say, but honestly, at that time I just wanted to die, I could not imagine another day waking up feeling like I was on fire, I could not eat, I could not even hear sounds. I was by myself, in my room, in agony, all of the time. What type of life is that? At that point I really had nothing to lose, "said Jessica.
Her mother remembers what the doctors told her after seeing her daughter for the first time. “They told me Jessica was in very bad condition, and they asked me if I was sure that I would want to put Jessica through the coma, because they didn’t think she would survive it.”
"I told them she did not have a life and this was our last hope, and that if she died, it was God’s will, and so we decided to proceed." said her mother.
Jessica awoke five days later, in better shape.
"One step forward ... 20 steps backwards"
However, upon awaking from the coma, Jessica had amnesia. She did not recognize her mother, did not know why she was in
and didn’t know what was wrong with her. She didn’t remember anything from her
life at all.
"Those were definitely some of the darkest moments. For almost a month I didn’t recognize my own mother. I was so confused, especially because everyone around me spoke a language that was not mine!"
Finally, she recognized her Mom and began to experience slight improvements.
But not for long. After suffering another infection, her lesions re-emerged and she became paralyzed once again.
"The saying is always “one step forward and two steps back”, but this felt like one step forward… and twenty steps back. At this point I did not want to fight anymore. I told my mother to turn off everything—all of the machines and medications that were keeping me alive. I felt like I was the one person God had forgotten about."
Sarah remembers a particular night when Jessica was very sick, she called and spoke with her husband and he raised the possibility that it was time to stop treatment. But to Sarah, that was not an option. Seconds later she told her husband, as long as she lived, she would fight to save Jessica’s life.
Months later, Jessica was worse than she was since first arriving to
Monterrey and she
underwent a second coma.
Fernando Cantu says the more years a patient has RSD, the harder the fight is to treat it.
"The expectations (of improvement) for Jessica were poor. Everything was against her. She was at high risk because of the malnutrition, her body being completely overrun by the disease. The situation was serious, difficult, but I had no choice.”
The second Ketamine coma, in August 2010, became the turning point, after which things finally started to improve.
"Obviously afterwards, she had to receive continued infusions of booster doses of ketamine, and begin to have rehabilitation, and desensitization. We also started a nutrition rehabilitation program for her and she began gradually recovering more and more weight, regaining strength and finally started moving forward. But it was a difficult road to that point.”
“Not on my watch”
Jessica spent 16 months in Hospital San José, and slowly began to regain her strength. Finally, the time came when she was strong enough to travel and return to her parents' house, in
although with frequent returns to Monterrey
to continue her recovery under her doctor's supervision.
Once back home, her story began to spread, she appeared on TV in her country and even caught the eye of the presidential couple Barack and Michelle Obama, who came to greet her.
"I feel very happy because it was a hard job every day, for nearly two years be fighting the dystrophy and infectious processes and I definitely feel very happy to see Jessica now doing so well, she is regaining parts of her life, and she is now able to have the social and personal life these patients all aspire to have,” explains Fernando Cantu.
His partner, Luis Barrientos, sized the scope of this achievement.
"From a medical point of view is an important achievement because, as I tell Fernando, nowhere else in the world offers this treatment and Fernando Cantu is the head of all this.
is now a world reference in these complex cases. "
“They are both truly my heroes, my angels… but there are other heroes in this case” as Jessica turns to her mother:
"She never gave up on me. I remember that moment when things were really bad and she talked to my dad in
and told him that I was in critical condition, and I needed extra prayers that
night. My father told my mom that I had suffered long enough, and the doctors
had done all that they could do for me. Maybe, now it was time to stop
treatments and let me go. My mom screamed: "are you kidding '?, not on my
watch!" (' are you kidding?, not while I'm here! '). And hung up."
Dr. Fernando Cantu continues to work on the study of the use of ketamine to fight Reflex Sympathetic Dystrophy, along with Luis Barrientos and a team of specialists in
Cantu is an anesthesiologist specializing in Pain Medicine and Barrientos is an
anesthesiologist specializing in critical care. Both are proudly from Monterrey.
Currently, Jessica lives with her parents, Sarah and David, and two sisters Katherine and Michelle, in
, overlooking the Naples,
Florida Gulf of
Mexico. She is in physical therapy and returns frequently to Monterrey
for treatment. Mind you, when she fully recovers, she has plans to return here
to complete her medical studies, that she has already begun online. She wants
to dedicate her life to researching the disease that she has suffered, and
helping others going through it.
Jessica says that when she's not in
the thing she misses most about the city are its mountains.
Ah! And she roots for the Tigres!