Sunday, June 23, 2013

El Norte- "Vive Milagro Medico"

Hola everybody! Another article came out in Mexico's El Norte newspaper today and I wanted to share it with you all! The article is in Spanish, but I translated it into English below :) Reporter Andrea Menchaca did a great job and I am very grateful to have another opportunity to spread awareness of this devastating disease.

Thanks for checking in!

God bless... or as they say in Mexico, Que Dios te bendiga!

Jessica


"LIVING MEDICAL MIRACLE"
By: Andrea Menchaca





Jessica Stevens believes in miracles.

Sitting in her wheelchair, the 25-year old from the U.S, moves, smiles and talks with enthusiasm, something that she could not do...until three years ago when an experimental research protocol at the Hospital San José Tec de Monterrey changed her life.

The native New Yorker arrived in Monterrey in 2009, as her last option for survival, her only remaining hope. For the past several years, she had lived in a hospital bed, unable to sit, walk or eat.


She felt like her body was on fire, like her head was being smashed against a concrete wall, and she had to use sunglasses and headphones to block out light and sound that caused her to have seizures.  She was very fragile, and only weighed 80 lbs.


"When I arrived in Mexico I was totally paralyzed, I had not been able to move my legs in four years, I could not eat and had been fed intravenously for three years," she tells El Norte during her most recent visit to the City.


After having visited hundreds of doctors, and being in a dozen hospitals in the United States, she had received all possible treatments without success.


Every medication had failed to alleviate the intense pain caused by Reflex Sympathetic Dystrophy, a rare, chronic neurologic disorder, often caused by trauma, characterized by pain of high intensity.

Jessica's RSD was triggered after a tick bite behind her right knee in 2003, during a summer camp, that infected her with Lyme Disease.

However, it wasn't until nearly two years later, when the pain and had spread through her whole body, that the diagnosis of RSD was made.

As a result of this disease Jessica suffered intense, sharp, burning pain in her body, headaches, muscle spasms, gastroparesis (a condition in which the stomach suffers paralysis), dystonia in the limbs, extreme sensitivity to any touch, light and the sound, excessive sweating, fever, weakening of bones and skin ulcers.



At this point, doctors said, 'listen, she is very ill, this illness has affected her entire body, there is nothing else we can do and we believe the best option would be to turn everything off-- her tubes and medications. We don't expect her to live another 2-3 weeks in this condition, they told me.' "recalls her mother,  Sarah Stevens, who is now writing a book of her experiences.

"Jessica was only 19 years old and I said 'no'... We will not stop fighting."

So when Dr. Anthony Kirkpatrick, a U.S expert on RSD, saw the seriousness of her condition, he recommended that treatment with a ketamine induced coma could be Jessica's last hope for survival.

However, the ketamine coma could not be done in the United States, as it is not approved there, it would have to be performed in Mexico by Dr. Fernando Cantu.


Jessica did not hesitate to try it, even though she would have to travel to a country that she had heard negative stereotypes about its health services, Jessica and her mother now confess.

"Basically, I would be medically induced into a coma, using massive doses of ketamine, an anesthetic and hallucinogenic drug, that would shut down my brain for one week. The hope is that when you wake up your brain re-starts again, much like when you turn off a computer that is not working and restart it." explains Jessica.

It is a very drastic and risky procedure, but Jessica was not afraid.

"I had nothing to lose, my life was a living hell: I was trapped in my body, in pain, unable to move or eat. I lost all of my friends, I could not go to school, all of these things that you think are important. I could not even watch TV or look at a computer, I could not talk to my sisters, I could not even wear clothes, why was I living? Honestly, I would have rather died than continue living like this. "

II. Rebooting her life


She arrived in Monterrey in August 2009 on a stretcher, in a special air ambulance that was paid through the charitable souls who have always supported the cause: family, friends, church and even strangers the Stevens family didn't know.


In Monterrey, she was received by anesthesiologists  Fernando Cantú Flores and Luis Alberto Barrientos Quintanilla, leaders of the research protocol.


Because of her critical situation, the very next day she was taken down to the Intensive Care Unit and induced into the ketamine coma, which lasted seven days.

"I woke up very sick after the first coma. I had many complications, infections and terrifying hallucinations. I had amnesia and did not recognize my mother., "says Jessica.

For three months I could not see anything and I was put into a second coma, but not with ketamine, to try to recover my vision ".

After almost one year, Jessica finally left the hospital, but was still  not well enough to return home. She and her mom rented an apartment in San Pedro, and hired nurses to attend her 24 hours a day.

Only two weeks after her discharge, the City of Monterrey was hit by Hurricane Alex. Their apartment was flooded and soon Jessica contracted a rare infection.


It wasn't long before all of the RSD symptoms began to return: she was once again paralyzed, having trouble breathing, could not eat and her skin lesions re-appeared.

" I began running a high fever- up to 105 degrees, and I was rushed to the hospital by ambulance. Things soon went from bad to worse. I ended up having respiratory failure, my heart began to fail, my temperature dropped to only 91 degrees, and I almost died " tells the young woman, who is also writing a book about her experiences.


"To save my life, I was put into a second ketamine coma, which proved to be the long awaited miracle. When I woke up, I could move my legs for the first time, I could see, I could breathe, 90 percent of my pain was gone!! It was like being in a new body, it was amazing. God had healed me."

Now, Jessica is in remission, she has to be very careful that the disease does not return, as it did with her dear friend, John Roach, who also underwent this treatment in 2009. He took his own life recently, like many others suffering RSD choose to do, as this disease causes one of the most intense pains you can have, according to the McGill pain scale.

She now lives in Naples, Florida, along with her parents, Sarah and David, her sisters Katherine, 22, and Michelle, 16 years, and her beloved dog Molly. She now enjoys eating food by mouth and amazingly, after nine years of not being in school, she took an exam to enter into college, and passed it! Since May she has been studing to become a Physician's Assistant.


In July of last year she met President Barack Obama and shared her story with him, with the hope that the ketamine coma treatment can be approved in the U.S. Jessica also gave him binder with scientific articles, letters from doctors Cantú Flores and Robert Schwartzman, RSD specialist and her story, photos and progress.


"In four years when I finish my studies I want to come to Monterrey and work with Dr. Cantu as a research assistant. I need to help others who suffer, no one should go through what I went through all these years. Doctors told me, 'there is nothing more we can do for you, you have three weeks to live', these are things that you should not ever hear, "she says.


"I came to Mexico and I feel like I was reborn here, I have a new life, I am grateful for this opportunity, but now I want to help other people to have this same chance. "


For now every six weeks she returns to Monterrey for small doses of ketamine and rehabilitation to regain strength in her legs, she was recently able to stand for the first time.



Jessica gives all of the glory and thanks to God first, then to her mother and then doctors Cantu and Barrientos, who have become like her adopted father and adopted brother in Mexico.



She also loves the mountains of Monterrey. "When I first saw the Cerro de la Silla, "she recalls," that mountain became the symbol of the beauty of God, who was here with me, telling me that I was not alone and that I could do this one more day, because there were days I could not anymore, but God was with me. "



(End of article)

--Sidebar--

Locals doctors, only in Monterrey, are working successfully on a research protocol to combat Reflex Sympathetic Dystrophy, a rare disease, which causes pain that is unbearable, in the aftermath of a trauma.

This condition is characterized by intense neuropathic pain, "says Dr. Fernando Cantú Flores, who for five years has led the ketamine coma study. These patients feel a burning sensation, like a sharp electrical shock through their bodies, and there are noticeable changes in the affected limbs, such as edema or significant inflammation, discoloration, temperature, sweating or sweating little compared to the other end ".

The anesthesiologist trained at the University of Texas in San Antonio, where he completed a specialty in pain medicine. He explains that the RSD cases he has seen have been caused from the bite of an insect, or more typically, from a minor injury, like a sprained ankle or a wrist fracture.


"For these patients, even the slightest touch of clothing, bedding, or air, causes significant pain. They become hypersensitive to light and sound, so they need to wear sunglasses or headphones."

Cantu is also director of the Pain Management Center, located in Zambrano Hellion Medical Center, adds that as reflex sympathetic dystrophy or complex regional pain syndrome is a little known condition, the patients he sees arrive in critical condition and their diagnosis is usually delayed by months or even years.

Cantu explains that during the procedure, the patient is induced into a coma using  high doses of an anesthetic drug called ketamine, which is not approved for treatment for reflex sympathetic dystrophy, but it has worked because it is a potent antagonist of the nerve receptors responsible for RSD.

Patients and family members are made aware that this research is a protocol, not a treatment, clarifies Cantú Flores, and that this is done to improve their quality of life, because they have tried absolutely every treatment and nothing has worked.

The ketamine coma is very risky. My patients are aware that the risk is very high. In our team there are three intensive care physicians: Rada Felipe Perez, Fernando Leal Castilleja and Luis Barrientos Quintanilla, and a cardiac anesthesia specialist Javier Gómez Valero.

Cantú shares that together, they have treated about 36 patients from England, New Zealand, Australia, Canada and mostly from the United States, of which 65 percent have obtained very good results, but the rest, did not, and have continued seeking alternatives.


This protocol originated in Germany, and they were the only ones doing it until Cantú and his team researched and consulted with the ethics committee and developed this protocol to allow it in Monterrey.


The ketamine coma now offers new hope to those who suffer with and  survive with this incurable disease.



*TO POST A COMMENT, CLICK ON "COMMENTS" BELOW*

17 comments:

Anonymous said...

Post your contact email please Jessica ..I would like to send something to you

thanks

Jessica's Journey said...

Hi, My email is hopeforjessica7@gmail.com
Gracias :)

Doctor Chixxels said...

Wooow congratulations! You are an example for life. Im proud for a person that never lost the hope. Kiss ;)

Doctor JLo. said...

Wooow congratulations! You are an example for life. Im proud for a person that never lost the hope. Kiss ;)

Gerardo Elizondo said...

Seras una gran Doctora estoy seguro!! Animo Jessica! apenas hoy conoci de tu caso, pero admiro tu espiritu de lucha, espero escuchar grandes cosas de ti en el futuro

Rosemary said...

Hi Jessica!

Thank you for being so gracious and selfless. After suffering so much for many years and then being granted a miracle with a new life, you have chosen to get closer to the disease that almost killed you rather than running away. You have chosen to help others through education and devoting your life to help those who suffer so much from this crippling condition. One would think that getting as far away as possible from this disease is where you would wish to be, that would seem normal and everyone would understand. I admire you for your courage and your Grace.

Thank you for remembering John and letting people know how desperate these patients are to receive relief; so desperate that death is preferable to living another second in that horrible, unending pain. This disease destroys the individual and their family.

I am very proud of you and know you will do great things with your education and your life. May God continue to bless you always!

Love and prayers,

Rosemary

arquero said...

Un extraordinario ejemplo de superación, de no darse por vencido nunca. No sólo es Dios quien ayuda sino también uno mismo con la voluntad de seguir adelante siempre

Juan Jose Cueto said...

Proud to be a part of this Hospital and a former trainee. It´s Ironic. Many times patients here in Mexico would much rather go to the United States for treatment. However other treatments that are very effective but not FDA approved are done in Mexico. So where do you place your confidence. Sometimes its not as easy as it looks.

We have extremely well trained Drs. in Monterrey.

Unfortunately the economic crisis, the hurricane, the violence outbreak and the Flu outbreak really took a toll on this great city and has been frowned upon other countries as "Unsafe" or "travel at your own risk".

When situations like this one appear, sometimes the benefits outweight the risk.


Hope you are doing OK. and best wishes.

Anonymous said...

Felicidades a Jessica y a los Doctores que hicieron posible que Jessica este en plena recuperacion y tambien a Jessica y sus padres....ya saben en Monterrey son Bienvenidos....."

Jose regio said...

Wonderful news! Blessings to Jessica and the mexican doctors! It's good ti know that not everything in this city is violence. God bless

teresa rodriguez said...

muchas felicidades jessica. eres muy afortunada. yo que vivo aqui en nuevo leon no me he podido consultar de nuevo. ya que tengo mielitis transversa..pero me gustaria una segunda opinion. bendiciones a ti y tu fam.

Henry Garcés said...

Dios pone los medios ,sin duda, y Monterrey se pone en la mira internacional como una opción segura, vanguardista y eficaz en tratamientos médicos. Un saludo a Jessica, Dios te bendiga.

Artemio González said...

Jessica, ayer conocí tu caso y la verdad estoy muy contento y muy feliz porque por fin te aliviaste de tu enfermedad, agradezco a Dios que sigas en este mundo y lo que más feliz me pone es que quieres vivir en Monterrey, verdad que mi ciudad es hermosa? y siempre que quieras venir o quedarte a vivir aquí serás bienvenida y bien recibida, en esta ciudad hacen falta muchas personas con ese espeitu de lucha, tenáz, con fe y dispuestas a lograr todo...FELICIDADES y des ahora ya eres regia (peronas nacidas en Monterrey)ánimo y tienes una hermosa sonrisa y por supuesto VIVA MÉXICO!!!

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Jessica's Journey to Getting Her Life Back

By Sarah Gina (Jessica's Mom)


As we begin this journey toward renewed health we would like to express our sincere heartfelt thanks and appreciation to Dr. Anthony Kirkpatrick and all the work he has done and continues to do in order to bring patients like my daughter Jessica back to a more meaningful life and restored from this devastating illness. Also, special thanks to Dr. Fernando Cantu and his team of doctors in Mexico for taking on a difficult case like my daughters, Words cannot express the renewed sense of hope that we have that one day, our Jessica, can regain her life that has been taken away from her – God Bless you all!

Jessica’s Story

Once an A+ student who loved school, was involved in many extracurricular activities, played varsity tennis, lacrosse and gymnastics and enjoyed spending time with her family and friends, our daughter Jessica has spent the last 3 years incapacitated, paralyzed, unable to sit or walk and eat. She spends her days confined to a hospital bed, wearing sunglasses and noise-canceling headphones, due to severe light and sound sensitivity.

Jessica and her sisters, 2 mos. before becoming ill

The pain she feels is indescribable and all attempted treatments have not even come close to relieving her suffering.

She has seen many doctors, undergone numerous painful tests and procedures, has been prescribed various medications, and has been hospitalized frequently including being intubated and on a ventilator. She is severely debilitated and currently is only 92 pounds. This is certainly no life for a 21 year old young woman!


Jessica is suffering from neurologic Lyme disease and Reflex Sympathetic Dystrophy (RSD), a severely debilitating and painful neuromuscular disorder. She suffers daily with constant sharp, stabbing, tingling and burning pain; throughout her body; severe headaches; paralysis; intense muscle spasms; gastroparesis; seizures; twisting of her limbs (dystonia); sensitivity to any touch (allodynia); extreme sensitivity to lights and sounds; excessive sweating; swelling; fevers; softening of bones; decreased hair growth; redness and discoloration of the limbs; and painful skin ulcers. The pain is constant and unrelenting, but despite her suffering, her faith in God remains and she still has hope for her future.

Jessica's painful skin lesions

Jessica's journey began in 1999, when she was only 11 years old. She became very ill with Mono and was bed bound for 3 months. She subsequently developed RSD (stage 1) of the lower right leg. She received early intervention and returned to playing sports and enjoying her life.

Jessica, age 15, at summer camp

Four years later, in 2003, while away at a sleep-away camp, she developed a rash behind her right knee, coincidentally in the same leg that previously had RSD!

At the time, the camps nurse & doctor told her that it was “duck rash” – a rash from swimming in the lake with duck feces. However, Jessica was able to obtain photos from camp from another camper which shows the classic “bulls-eye” rash from Lyme disease! It wasn’t until much later and only after developing symptoms and becoming very ill, was the diagnosis of Lyme disease and Babesiosis (another tick-borne infection) made.


Most people (and doctors!) have no idea how serious Lyme disease can become and no clue how to properly diagnose it. Unfortunately, if she would have been promptly diagnosed and treated for Lyme disease, the RSD would not have been triggered and she would not be suffering.

July 2003, Jessica's Lyme disease rash

If it wasn’t for her doctor, Dr. Liegner, and his expertise with complex cases of Lyme, and his determination to try any means in getting her well, by getting a “team” of doctors on her case, we wouldn’t be here today, still fighting. We owe him a deep sense of gratitude for all he does for Jessica!

During these past three years and with the pain becoming more intense and unbearable she has been seeing Dr. Finkelstein for pain management. He has even made house calls to spare her the pain of coming by ambulance to his office. Jessica has been treated with multiple pain medications, at the highest possible doses, as well as an implanted dilaudid pain pump, which delivers potent medication straight into her spine. Many doctors have told us that with the amount of medications Jessica was taking would be enough to “kill a horse”—yet they had little to no effect on her. If it wasn’t for Dr. Finkelstein trying to alleviate her constant, severe, unrelenting pain, I don’t know how she would have managed. He is very special to us as well.

Recently Jessica was transported by air ambulance to Tampa, Florida to see Dr. Anthony Kirkpatrick, a world renowned RSD expert. Dr. Kirkpatrick told us that Jessica is one of the most debilitated patients he has ever seen.

Jessica getting into the air-ambulance to go see Dr. Kirkpatrick

Upon his testing and because Jessica's condition is so severe, Dr. Kirkpatrick is recommending the only treatment available that can possibly help relieve her suffering, and afford her some semblance of a “normal” life - the Ketamine Coma Procedure - a clinical trial that is being conducted in Monterrey, Mexico.

During this procedure Jessica will be put into a coma , with the hope that her nerves, brain and spinal cord will “reset” -so that her nervous system sends the correct signals to her brain.


Yes, this is a radical, scary treatment, however, for Jessica, "scary" is thinking that she could spend the rest of her life in this condition, unable to walk, eat, or take care of herself. Since all reasonable treatments have failed to help her, we feel we must try everything possible to help Jessica regain her life.

We understand that due to Jessica’s fragile condition, there is a high risk associated with this procedure. We are also aware that other patients with severe RSD like Jessica's have had success.

Jessica’s goal is to one day become a doctor. Our hope is that with this study she can have that chance. As her Mom, I know that she will be a great doctor because when a patient presents in her office and says “Doctor, I am in pain and words cannot express how bad it is” – my daughter –Dr. Jessica– will be able to say - :I know how you feel, I’ve been there too. So, take a seat and let me tell you a story”….

We are so thankful and feel so blessed to have been led to Dr. Kirkpatrick.

God is good and with his help guiding Dr. Cantu and Dr. Kirkpatrick, our hope is for Jessica to be able to return to us whole again and pain-free!