The Pain Experience: Meeting the Needs of Pain Patients by Stephanie Lynn Christianson

The Pain Experience: Meeting the Needs of Pain Patients
by Stephanie Lynn Christianson

Executive Summary
Pain is difficult to define with certainty. Healthcare professionals are confronted with a high degree of complexity which affect the standards of care. The International …

 

Raising Awareness, Building Community by Stephanie Christianson

Raising Awareness, Building Community
Stephanie Christianson

The Juvenile Diabetes Research Foundation (JDRF) hosted a series of two 5k challenges here in Atlanta, Georgia. My family and I participated in last year’s 5K held on the 19th at Verizon Amphitheater in …

 

Share Your Story: Stephanie Lynn Christianson; Arachnoiditis

Stephanie LynnOne day in May 2006, out of nowhere I was suddenly overtaken by pain in my knee. I saw the orthopedist, whom at the time was on the fence about proceeding with a surgical intervention. I had the surgery, but the pain never really went away. I left for my freshman year at Vanderbilt University still feeling slightly off. I had been there a month when the pain began to spread gradually to encompass my entire left leg. I was unable to leave my dorm room and climb the stairs and getting food was an absolute challenge. I was 18 years old at that time and terrified.

The third doctor I saw trying to address what was going on finally realized I had Chronic Regional Pain Syndrome (CRPS). The only thing I can remember from that day was the effect it had on my mother who fully understood what this could mean for my quality of life. Needless to say, she was devastated. At that point in time, I was an ostrich with my head in the sand. I found it painful at first to even think about what was happening to my leg. My family worked relentlessly and we traveled the United States looking for a proper intervention and treatment for CRPS.
In the meantime, I was in the middle of my undergraduate career. I had to take off whole semesters because at that point I was unable to function enough to really make the most out of a stellar education. There were even times when I would start a semester and have to leave or reduce my course load. I was fortunate enough my University worked with me and my very unique situation. I will always be grateful to them.

Inch-by-inch, we explored every routine surgery procedure related to CRPS, infusion, implanted device, medication therapy, and holistic remedy. It wasn’t until SkyMall, that crazy magazine with the high prices and crazy objects, and a dud of a visit with a holistic specialist in Maryland to find what we were looking for therapeutically. As we took off, my mother found an ad in SkyMall for the Dellon Institute and quite literally ripped the page out of the magazine. After speaking to the surgeons involved in these techniques and interventions, I found the right match with Dr. Sean Wolfort, MD. After a series of nerve trans-locations (where they moved my hyperactive nerves into dense tissue to trick your body), it appeared I was gaining mobility.

College still posed a problem. There were so many doors and inaccessible areas for those with physical handicaps. It took me approximately 5 years into my diagnosis that I really began to advocate for both the pain community as well as those with physical disabilities. I rely on crutches (a single if it’s a good day, a double if it’s not) and found that posed some very significant obstacles if you were going to pursue rigorous studies. I was finally ready to talk about what I go through in living with CRPS at a young age and the journey I have taken. As such, I looked inside my community, which at this time was the entire University. Those without physical handicaps fail to realize the struggle people have obtaining food when they rely on crutches, canes, wheelchairs, and all other mobility aides. With enough tenacity, I was able to implement a program that helped anyone either in an acute or chronic state that needed help getting the basic necessities. Moreover, I participated on a committee aimed solely on making the campus more accessible. Things such as maps clearly indicating where elevators were in buildings or adjusting how doors open to prevent injury to the person.

This ongoing experience has shaped my life and has motivated me more than one can possibly imagine. Prior to my diagnosis, I was determined to pursue a career as an attorney. Following my diagnosis, I have realized the best way to implement change is to roll up your sleeves and get to work. I have grown tremendously and have accepted some days will be more painful than others. I believe in keeping my goals in sight as it provides me with the fortitude to go on and work through it all. Here and now, at age 27, I have been fortunate to work in a laboratory that deals primarily with pain management toxicology and pursue my doctorate in neuroscience. I am sincerely hoping to bring some degree of relief to the CRPS patients of the world.

Thank You! Stephanie Lynn Christianson

 

Share Your Story; Donna Corley; Arachnoiditis Donna Corley Arachnoiditis patient

Donna Corley is a 43 year old mother and grandmother. This is her story of how she developed Adhesive Arachnoiditis.

In 2009, I had a bad fall, and landed hard on my tailbone. Two weeks later, the pain had become unbearable in my thoracic and lumbar area that I could not stand, sit, or walk without massive pain. I made an appointment to see my Primary Physician in which she ordered an MRI. A few day’s later the nurse called and told me I had Tarlov Cyst Disease. I continued to work, but the pain progressed, and so did my symptoms.

As my symptoms increased, I began to research for the symptoms I was having like, burning down my spine, down through my hips, all the way down both legs into feet, the sensation of bugs crawling on my legs, and walking on broken glass when I would try to walk. In 2011, I was forced to quit my job, and file for disability, because the pain had became so bad that I could no longer work. In 2013, a good friend suggested I send my MRI’s to a well renowned doctor who has researched Arachnoiditis for over 20 years, because my symptoms were closer to Arachnoiditis than Tarlov Cyst Disease. I sent him my MRI’s, and 5 day’s later I received the call confirming I indeed have Adhesive Arachnoiditis. The cause was from a car wreck in 1989, when I broke 3 vertebrates in mid thoracic. I was in the hospital for 8 day’s, and was never told this had happened. Not only was it in my thoracic, but also in my lumbar, from two epidurals in 1992 & 1995 with the birth of my 2 boys. Again, I was never notified that my spinal cord had been punctured during both injections.

I was diagnosed in March 2015, with Chronic Regional Pain Syndrome (CRPS/RSD).

My life will never be the same again. I can not drive anymore because I can not sit for long. I sleep 3-4 hours a night because the pain. Most of my days are spent laying down, or in my wheel chair. I have to lay down every 2-3 hours to help CSF (cerebral spinal fluid) better flow to my brain because of the scar tissue inside my spinal cord canal that hinders the circulation of CSF flow in my spine.

I have lived 26 years with Adhesive Arachnoiditis, and it has taken me 24 years to be diagnosed with Adhesive Arachnoiditis. #MakeADifference #ShareYourStory #Arachnoiditis #julyARACHNOIDITISmonth

 
Translate »