Jessica R. Stevens
Her Journey to Getting Her Life Back
By Sarah G. Stevens (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 called RSD or Reflex Sympathetic Dystrophy. 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 – May God Bless you all!
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; she is not even able to watch TV to “escape”.
The pain she feels is indescribable and all attempted treatments have not even come close to relieving her suffering. She has seen many, many doctors, undergone numerous painful tests and procedures, has been prescribed over 50 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. She describes the pain in her legs as if someone is pouring acid over them and her head pain as if she has banged it against a concrete wall! 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 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 underwent physical therapy and the RSD went into remission. She returned to playing sports and enjoying her life.
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 doctor and nurse at camp said it was “duck rash” – a rash from swimming in the lake with duck feces. Through Jessica’s sheer determination she was able to obtain photos taken of her at the 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.
If it wasn’t for her doctor, Dr. Kenneth 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. At this appointment he measured her pain threshold and temperatures of her limbs. Her pain thresholds were very low and there were significant temperature differences throughout her body. An occipital nerve block was also performed at that appointment with no benefit. Dr. Kirkpatrick told us that Jessica is one of the most debilitated patients he has ever seen.
Dr. Kirkpatrick then explained that there are currently three kinds of ketamine treatments for RSD: the awake technique (continuous low dosage for 4-5 days), outpatient high-dose infusion (4 hours a day for 3 days), and the coma technique (continuous high dosage for 5 days).
Upon his testing and because Jessica's RSD is full body and so severe, Dr. Kirkpatrick is recommending the only treatment available that can possibly put her in remission 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 for five days, with the hope that her brain will “reset” itself 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 Stevens – 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 you, 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!
David & Sarah Stevens (Jessica’s parents)
August 9, 2009
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