Archives

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

 

BE THE GIFT OF HOPE – BE A HERO
By Barby Ingle

In January my last living grandparent passed away. Now, my father has failing kidneys and is on dialysis. For the past two years he has been in desperate need of a kidney transplant. A little over a month ago, I lost my mother to COPD. What a whirlwind this all has been. In this time of sorrow and loss a miracle happened that I want to share with you all; make that 6 miracles in one.

One of our Executive Board members, Tenah Callison lost her son on the same day my mother passed. As a matter of fact, when Tenah called to tell me that her son Dalton was a registered organ donor and that they decided if my dad was a match that he would get the lifesaving kidney was the exact time my mother passed. Tenah and I were both praying and holding each other up even though we were thousands of miles apart. It turns out Dalton was a match to my dad. It was all so surreal. I can’t even put into words that amazing things that had to fall into place for this to happen.

The next morning my dad headed to the hospital for his final check before the transplant would take place. During that exam they found that he had two heart blockages. These blockages were not there in December when he was last tested. He was rushed into emergency surgery and was unable to receive the kidney coming from Dalton. My dad is still on dialysis and healing from heart surgery. There is more news coming on this front that I am not ready to share. Over the next few months your prayers are still needed that this process will all work out for my dad and a living donor who has since come forward for him. I pray that in the next few months he heals perfectly and is ready for that life giving chance. Not only for him, but for the selfishness of me, my siblings, and his 6 grandkids. We need our daddy and Grampa, he is the great patriarch of our family.

Back to the miracle of multiple miracles. A while back Dalton had told Tenah that he wanted to be an organ donor. He knew that was one of his purposes here on earth. He had it marked on his driver’s license. The second part of his actions Tenah did not know about until after the accident that lead to his life in our world was complete. Dalton took the needed step of enrolling as a donor on his state donors register. Most people think that just obtaining or renewing a driver’s license that states you are an organ donor is enough. There is an extra step with internet registration that makes the decision so much easier and smoother process for all involved. Dalton knew in his heart that he wanted this, he expressed it to his family, signed up at the DMV and registered on the state site.

Most potential donors are admitted into a hospital because of an accident that involved severe head trauma, brain aneurysm or stroke. With Dalton it was a head injury after the car he was riding in pulled over to the side of the road due to a flat tire and was hit from behind by a passing car. His hospital providers worked hard and long, doing everything possible to save his life. Tenah being a pain patient herself also made sure that they provided him pain care in case he was feeling any pain from the accident. A smart choice while testing him and working to save his life, as good pain care is also important. After they tested him for brain death and exhausted all possible lifesaving efforts with no response from Dalton preparations were made to fulfil his wishes to be a donor. Dalton saved 6 lives that day. 5 with vital organs and my father.

If you are planning to be a donor after you pass, please do what Dalton did. Register as a donor with your state agency (see link at the end of this article). If you are not registered in the data based the providers will seek consent from your next of kin. Make it easy on your survivors and let your wishes be known.

It is so important that if your wishes are to be an organ donor like Dalton was that you know how the system works. Did you know that there are options for living donors as well as donors who have passed?

Do you know that by being a donor you give the gift of hope to families and friends of thousands of individuals waiting to find their match for their life to be enhanced through organ donation? Each day, about 80 people receive organ transplants. However, 21 people die each day waiting for transplants that can’t take place because of the shortage of donated organs. There is a need for living donors and it’s becoming more common to donate organs or partial organs while living. For living donors the type of orangs you can donate include a kidney which is most common, as well as a lobe of a lung, partial liver, pancreas or intestine.

This article is in loving memory of Dalton Bryant Callison – March 25, 1993 – May 2, 2015. I will forever be grateful for Dalton’s gift to my father and the other 5 families that his sacrifice assisted with his life giving miracles.

To register to become a donor in memory of Dalton B. Callison please visit www.donatelife.net

For more information on becoming a living donor, go to www.transplantliving.orgDalton 2 or contact your local transplant center. 2015-06-12 16.34.04

 

Sheila Kim Purcell #ShareYourStory #MS
Sheila Kim Purcell
August 20,1999 was one of the most life altering days of my life. The first was the day I found out, I was going to have a baby. This day was not so joyous as it was the day I found out I had MS. I was a single parent with a daughter in high school, what was I to do, how was I going to tell her?

I had been going to the doctor for months complaining of headaches and numbness in my arms and legs. The doctor kept insisting it was stress, he gave me medication for the headache and told me to rest more. Then came the pain, the best way I can describe it, is it felt like every muscle in my body just ached, almost like having the flu. The doctor again dismissed what I was telling him. When the fatigue sent in, I felt it was time to find a new doctor. I explained all of my symptoms to the new doctor, from the headache, muscle aches, fatigue my inability to concentrate. He ran multiple test and they all came up negative.

He then said he wanted to send me for an MRI and spinal tap, 5 days later he called me and asked if I could come to his office that day. I knew that was not a good sign. He walked in and said the words I will never forget, “Sheila I am sorry to have to tell you this, but you have Multiple Sclerosis”.

I thought my life was over. Over the next several years, I was on multiple medications, in which the side effects were horrible. I almost missed my daughter’s HS graduation due to the pain and fatigue. I cannot do everything I was once able to do by any means as I let MS define me for many years. I have changed my diet, due to balance issue, I have installed grabbed bars in my shower. I try to avoid stress at all cost. I am now a Pain patient Advocate. I tell every person I met with MS you can let MS define you or you can define MS, I chose the latter! As I am writing this I am in a flare, so as you can see MS does not have to control you

Learn more about MS here

 

Dr.Webster_HealthCareHero (1)Where Do You Tilt Your Lance?
by Guest Blogger; Lynn Webster, M.D.

 

 

One sunny noonday in the spring of 1990 I received a call from Salt Lake City primary care physician King Udall.  This is the city where I had been practicing medicine since completing my residency in 1980. Dr. Udall was known for treating patients without insurance, many of them destitute. It was one of these patients he was calling me about now, a woman who desperately needed his help and mine.

“Lynn, I have a sixty-two-year-old lady with acute herpes zoster (shingles) involving her left shoulder, axilla, neck, and face. The lesions are weeping, with serous sanguineous fluid, and she is screaming with pain. She can’t tolerate any clothes on the areas and is pleading for mercy. I’ve tried narcotics and they don’t touch the pain. Can you help?”

I said, “Have her come be admitted to the hospital, and I will see what I can do.”

Later that day, at Holy Cross, I met Placida Ramirez*, as well as her husband and two grown daughters, who obviously were quite concerned about her suffering. In her sixties, Placida was heavyset, with light-brown skin and long black hair. She appeared rugged, but she was obviously in severe pain. She was restless, frowning. She paused between words because, as she described it in her broken English, the pain was like an electric shock radiating through her body.

When I began my exam, I quickly discovered that Placida had more problems than shingles. She also had a flesh-eating cancer that had eroded her breast and was invading the left armpit. This was a death sentence already well on its way to being served. I glanced at Placida. She was avoiding my eyes.

I could picture what must have happened. Like many people who come down with symptoms they know or suspect to be life threatening, Placida, instead of getting help immediately, tried to make the symptoms go away by ignoring them. Her lack of health insurance further discouraged her from seeing a doctor…until the pain exceeded her ability to deny it and she went to see Dr. Udall. If cancer was killing her, fear and poverty had joined hands to hurry it along.

I had seen similar types of pathology in the operating room prior to a palliative mastectomy. In those instances I was always able to relieve the pain with a general anesthetic. Not this time. I immediately knew Placida was not a typical patient with an acute pain problem but a patient needing end-of-life pain relief.

I placed an epidural in her upper spine where the medication could block pain originating from the nerves in the armpit, shoulder, neck, and breast. The medication was a local anesthetic like Novocain and small amounts of fentanyl (narcotic). Within a few minutes of my starting Placida’s infusion, she was essentially pain free.

The dying woman rested once the pain was better. Her husband and daughters began to smile and thank me, relieved that their beloved wife and mother was feeling better. Due to the language barrier and some cultural difference, it was not easy for us to communicate, but it was obvious by mannerism and unspoken communication that the family was appreciative. But I noticed that Placida herself didn’t have much to say. She was naturally still weak, but more than that, she seemed to have gone into herself and become more depressed. I think that now that the pain was better, her mind must have begun dwelling on the more serious problem of her cancer. She could no longer ignore the inevitable. She was facing the end.

Placida received the medication for the next three days. It kept the pain away sufficiently so that she could eat and sponge-bathe. For a while, she was able to feel more normal.

I wanted to send her home with the epidural to continue to give her pain relief, but I could not find anyone to provide the service. Since she didn’t have insurance, and since Medicaid wouldn’t pay for home infusion of this type, she was going to be forced to leave the hospital without the epidural. In a short time, she would be plunged back into the same pain she’d had when I’d first met her—a pain that, Dr. Udall had said, no narcotic would touch. Sick inside, I removed the epidural on the third day. She was discharged, to be followed up by Dr. Udall and the oncologist.

A few weeks later she died.

I was afraid to ask if she had died in pain, because I was sure I knew the answer.

Although death is inevitable it should never be insufferable. Unfortunately I have seen far too many people struggle at the end of life and throughout their life to access the type of care that everyone should be able to receive. I have always believed that pain relief should be a right and not only available to those who can afford it. For this to become a reality, people of all interest must unite to demand this level of humanity.  Here is where I title my lance.

*The patient’s name was changed to protect her identity.

Lynn Webster, M.D. is the Vice President of Scientific Affairs of PRA Health Sciences and an industry leader in helping physicians safely treat pain patients, and develop safer and more effective therapies for chronic pain. His latest book, The Painful Truth, will be published in September 2015. You can follow him on Twitter and Facebook.

 

To GO or Not To Go
By Barby Ingle, President
Power of Pain Foundation

Imagine going from living an active life, where dance was a central part of your life, to living in pain that limits your every move. It happened to me. As head of Washington State University’s cheer and dance programs, physical fitness was a central and wonderful part of my life. That changed in 2002 when I was diagnosed with a painful autoimmune disease that ended my ability to coach. Pain like that isn’t just physically limiting – it is morally debilitating.

 

It took me years to get a proper diagnosis. I was trying many treatment options such as physical therapy, massage, chiropractics, and medications. Once I got my providers to listen to my pain symptoms and challenges of living with chronic pain I was able to obtain access to life giving medications and although the opioids helped with pain levels there are other symptoms that I was then dealing with on a daily basis. Sometimes you have to negotiate with yourself, I did.

After taking opioids, I realized that I was getting so constipated that it was painful. This was a different pain, and abdominal pain that was sharp, cutting feelings. I had days where I had to decide, do I take my opioid or do I suffer with the more severe chronic pain so I can relieve myself of the abdominal pain and bloating from opioid induced constipation (OIC) I was experiencing.  And when I had another complication like a kidney stone, oh, it got even worse. The constipation showed up in x-rays it was so severe. Why am I sharing this with you? This is a topic not spoken about much publically, but it is real and it exists. We need to start a conversation!

 

Although nothing stopped the OIC besides stopping the opioids. I had to make some choices on lifestyle and personal habits to help manage my pain and accompanying symptoms. Imagine if there was a way to help elevate OIC and take the pain medication that helps. Sounds great right? As I struggled with OIC for over 2 years I realized that I could do a few things that would help. Even when not feeling like eating, I would be sure to eat breakfast. I would include a hot drink and high-fiber food like wheat bran cereals because my provider told me that they promote bowel movements. I also found that I did better at expelling my waste when I didn’t use extreme force or strain when trying to go. I tried OTC laxatives, and a powder medication stirred into my drinks, heating pad on my back and stomach, stretching. It was a constant struggle to go or not to go.

 

It is time to fulfill the promise of new treatment options that offer relief and relief. As a leader in the pain community and someone who advocates for thousands of pain patients each year, I strongly believe that we can combat the issue of OIC. How? We can talk about it which raises awareness and takes some of the stigma out of it. It also helps our providers and caregivers better understand how to help us. It is hard enough to talk to our significant other let alone our provider, but we need to start talking so we can start going.  We must find a balance between opioid medication and being able to live fuller lives without side effects like OIC from these life giving medications.

 
Translate »