Two years ago, I wrote a column about my first-born daughter, Amanda, and her struggles with a devastating neurological disease called Complex Regional Pain Syndrome. Of all the articles I have written in the last four years, this one got the most attention. After it was published, many of my patients thanked me for sharing this very private story and told me they were praying for my daughter.
In that article, which I called “Rise and Walk,” I shared how Amanda had deteriorated and was at times in a wheelchair. This disease not only causes paralysis, but relentless pain that is believed to be some of the worst pain that a man or woman can endure. It has a predilection for affecting many more women than men, although no one knows why.
Multiple types of treatment had failed, and my daughter’s disease was progressing. The article went on to describe how, after significant research, we decided it was time to try an investigational treatment plan offered at a clinic in Indianapolis.
Amanda received daily infusions of a drug called ketamine. Her first treatment was a daily infusion for two weeks, then about every six weeks we would travel to Indianapolis for a recurring three-day ketamine infusion. We did see some initial improvement, and my daughter was able to walk again; but the improvement did not last. By four weeks after completing the prior infusion she was back in a wheelchair. This went on for nearly two years, until the ketamine began to cause serious side effects that could not be tolerated any more.
Searching for help
My daughter has always been very resilient, but it became clear she was losing the battle mentally and physically. She spent hours on the internet researching other potential options for treatment. She found two that gave us some hope. A clinic in Italy had a novel treatment that was proving to be helpful for some patients. As we seriously considered traveling to Italy, Amanda learned of a doctor in Fayetteville, Arkansas, that was dedicated to treating CRPS. She uses a multidisciplinary approach (eight different treatment modalities) to treat this serious illness. As I learned as much as I could about this clinic, I remained skeptical. There was one thing I had to get over — she was a chiropractor, and being an M.D., I had to get over years of biased information my brain had consumed about chiropractic treatment.
My daughter was relentless at asking to go to this clinic, and as always happens when one of my four daughters asks their daddy for something this important, I succumbed.
The first day I took Amanda into the clinic, I encountered difficulty in getting her wheelchair through the front door. A beautiful young lady dressed in scrubs ran out to greet us with a smile, grabbed the wheelchair and safely maneuvered my daughter into the clinic. One of the first things I noticed sitting with my daughter in the waiting room was that the patients were talking to each other with smiles and even some laughter. This is not what we had encountered as we visited various pain clinics seeking help for her condition; usually there was silence and most eyes cast down to the floor. I could actually feel the hope in the room.
They finally called Amanda’s name, and I wheeled her back to the exam and treatment area. Waiting for us was the doctor, who introduced herself as Dr. Katinka. She was one and the same person who had helped us get through the front door just minutes before! Her eyes immediately told us she cared and that she would be completely dedicated at trying to make Amanda better. She shared her concern, however, that my daughter had had CRPS longer than anyone that she had ever treated, and she could not guarantee success. Amanda was diagnosed with CRPS after a freak accident when she was 15, and now she was 39.
One of the first treatments Amanda received was a very gentle maneuver that adjusts the atlas at the top of the spine. The atlas is the portal to the entire spinal cord and is closely involved in vagus nerve function. Dr. Katinka believes that abnormal vagus nerve stimulation is one of the root causes of CRPS.
She placed one finger from each hand in a strategic location just in front of both ears, and applied pressure and traction. Before she began this treatment, Dr. Katinka asked Amanda what her pain level was, and my daughter responded by saying it was a 9 out of 10. After about one minute, she asked Amanda again about her pain level, and she said it was an 8. After several more minutes Amanda began to cry. I moved closer to her, grabbing her hand to give her support. Dr. Katinka in a very calm, reassuring voice asked her why she was crying. My daughter replied that they were tears of joy because her pain level had dropped to a 6 — the lowest level it had been in months! This same maneuver would be done on the average of twice per day during the next 11 weeks that she received other intensive treatments at the clinic.
The key to success
An important component of the treatment plan was neuromuscular re-education. It is too complicated to go into much detail, but this therapy re-educates muscles, breaks the neuro compensation pattern and can reverse chronic pain. It primarily has been used to treat injuries in professional athletes. Many NFL players and professional baseball players have used this to get back on the field in record time.
Dr. Katinka theorized it would also work for CRPS, and she was right. The treatment protocols are quite complex and can cause significant discomfort during treatment, however. Electrodes are attached to the part of the body being treated, and biphasic electrical impulses are introduced as that body part is exercised. I watched my daughter groan as the intensity of the electrical impulses would increase as she pushed through multiple treatments. She endured these once and sometimes twice per day.
Amanda was also blessed to have a young man highly trained in accelerated neuro recovery, who also had a natural ability to be a psychotherapist. There were times she was ready to throw in the towel, and this man would have just the right words to motivate her to press on. (And yes, the Holy Spirit played a major role, no doubt!)
As the weeks went on, the waiting room became louder and more joyful, as all the patients shared their progress and their hopes and dreams for the future. People from just about every state had traveled to Fayetteville for treatment. Dr. Katinka is beginning to get international acclaim as well. We met a young lady from Belgium with CRPS, who had failed to be helped by multiple treatment centers and had come across the Atlantic for help.
After about two weeks Amanda was walking again. After seven weeks she actually ran down a hallway and into my arms for maybe the best hug I have ever received from her. There were tears of joy all around, and I really mean all around! The clinic’s staff, other patients and Dr. Katinka routinely became emotional as my daughter and multiple other patients reached new milestones.
Dr. Katinka decided to feature my daughter on her Facebook page so that others with CRPS could be inspired and hopeful. Her first walk, and the first time she ran in years, is captured there. That special hug was memorialized there, too. Over 10,000 people have watched these videos and found hope for themselves or a loved one who has CRPS.
Amanda has been in remission for two months now. The number of prayers my wife and I have offered up over the years is massive, and we pray every day that her success will continue. Friends and family cannot believe what has taken place, or how this could have even happened. But, I know. It was a miracle in Fayetteville.
If you would like to learn more about the clinic or see video of Amanda’s story, go to “The Neurologic Relief Center” on Facebook.
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