Woman's online journal of disorder paves way for new medical courses - TheDerrick.com: Front Page

   
 

Woman's online journal of disorder paves way for new medical courses

Posted: Monday, September 8, 2014 3:11 am | Updated: 4:45 am, Mon Sep 8, 2014.

Robert Paddock is a quiet man with a single mission in life - to tell the story of his late wife's struggle with chronic pain and raise awareness of her illness.

He also wants people to know her suicide wasn't meaningless. That she lives on.

Robert describes Karen as his "best friend," and was devastated when she ultimately lost her battle with her daily, debilitating headaches and committed suicide on Aug. 7, 2013.

When Robert approached the newspaper, he wanted someone to write about his wife's suicide. An editor explained to him that newspapers don't usually report on suicide cases for fear of copycats. But Robert was humbly insistent.

"Her case is something different," Robert said.

And it was.

"My name is Karen Shettler Paddock. I am dead. I committed suicide on August 7, 2013, as I could no longer stand the excruciating headache caused by a Intracranial Hypotension, more commonly known as a Cerebrospinal Fluid (CSF) Leaks. A condition that is more common that many think (for example Actor George Clooney had a CSF Leak and considered suicide), yet is so unknown that some doctors argue the condition does not even exist," reads the opening page of Karen's online journal.

Robert has made it his personal mission to help others by maintaining Karen's online journal. Karen wrote for more than 20 years about her life with chronic, debilitating headaches and struggle to find a diagnosis. Her illness became so severe that she saw no other way to relieve her pain than to take her own life.

Yet out of this tragedy, some hope has arisen.

Instructors at the Duke University of Medicine are using Karen's journal, found at http://www.kpaddock.com, as a case-study to teach students how to recognize the symptoms of a Cerebrospinal Fluid (CSF) Leak, the rare disease that Karen suffered from.

Karen's journal has also inspired those suffering with chronic pain across the globe. Many people have already personally reached out to Robert to know that Karen's story has helped them - some were considering suicide and sought treatment after reading Karen's journal. Others were able to recognize their symptoms and get tested for a CSF Leak after hearing about her struggles.

Karen's first-hand account of her illness gave an honest, heart-wrenching depiction of what it is like to live with debilitating pain day-to-day.

One of the most baffling symptoms of her illness is that Karen's headaches would go away when she was lying down, only to return when she stood up for any length of time.

"CSF is a very misunderstood condition because when you're lying down you feel better. When you wake up in the morning your brain is full of fluid and your muscles are relaxed which plugs the leaks," Robert said.

"You want to get up and get on with your life. But a few hours later, this debilitating headache comes back. Because of this, it's sometimes called an 'afternoon headache'," he added.

Karen felt that many of her friends and family did not understand her condition, and it lead to her feeling extremely isolated from everyone but her husband and beloved dogs.

"People that have not experienced severe unrelenting pain for months or years expect you to suck it up and continue your normal daily activities. Chronic pain makes you feel alone. Like no one understands how much pain you are in," wrote Karen Paddock in her online journal.

Karen went from doctor to doctor seeking a diagnosis for her symptoms and for years heard that she was healthy and only seeking attention.

"Many of those doctors told her that 'it was all in her head' or that she was making up her symptoms to get attention," Robert said.

Yet her headaches continued.

Karen saw more than 35 different doctors who were unable to give her a proper diagnosis or provide relief from the pain she experienced.

"My depression is from the pain I feel, too. I think sometimes, that if we do not fit the typical symptoms that doctors learned about in medical school, that they blame our problems on us. Like they think it is all our fault," Karen wrote.

In her frustration, Karen began researching on her own.

"She became a huge supporter of the Franklin Library. As far as book-based learning goes, she could have gotten a doctorate in her condition," Robert said.

Eventually, Karen's contact with the outside world became extremely limited. In addition to Robert and her pets, Karen tried to interact online a few hours a day with others who suffered with chronic pain. When building Karen's website, Robert poured through emails and more than 9,437 Facebook private messages to compile a 20-year medical history of Karen's struggles with her CSF Leak.

Eventually, a specialist in Pittsburgh was able to give Karen a proper diagnosis. But her body ultimately rejected the spinal patches that were supposed to provide her with relief. Only four doctors in the world specialize in treating CSF Leak, and Robert believes we don't know enough about the illness to properly treat it long-term.

"Research into such leaks is only about 10 years old We just don't know enough on how to treat CSF Leak without causing rebound pressure issues that cause the exact same excruciating headaches," Robert said.

In an effort to learn more, Robert is trying to set up a $750,000 Fellowship program at Duke to train more doctors and fund better research equipment that will locate CSF Leaks sooner. Those who would like to donate can do so through http://www.kpaddock.com

When asked how he dealt with Karen's death, Robert turns the conversation back to Karen's story. His ultimate goal is that her story be told and help others.

On her last day, Karen wasn't just having a headache. Her symptoms included issues with her vision, nausea, dizziness and hearing. She spoke to her next-door neighbor earlier in the day, and he said that she appeared fine. Robert says that chronic pain sufferers often learn to mask their pain so well that they will continue smiling on the outside, even though they feel horrendous inside.

Robert still misses Karen every day. She was the love of his life, and his constant companion. Without her, he says he feels an ache in his heart that will never go away.

He is determined not to let others take the path that Karen chose to take.

"I tell them not to do this, that if we don't raise awareness of their illness and pain no one will ever know when they need help," Robert said.


[

Robert here, I am adding some follow up notes:

I spent several days at Duke University School of Medicine after this story was published to findout exactly what was happening. The highlights were meeting Professor Daniel Schmitt, Ph.D. from the Department of Evolutionary Anthropology and Associate Professor Leonard E. White, PhD from Duke Institute for Brain Sciences (DIBS).

Dr. Schmitt is the one that oversees the students doing dissections. He has already started to teach Karen's story as part of his course. He is now putting special emphasis on the Dura and how it can lead to headaches. In the past the Dura was just something to be removed to get to the Interesting Stuff. They would like me to return to speak to the students, and take part in a dissection myself (not sure I'm up to that?).

We then meet Professor White. They will make Karen's Journal required reading for the Neuralbiology class (Future Neurologists), starting in January 2015.

This course is also available as an Massive Open Online Course (MOOC); course stats for the first year in 2013. There are currently 100,000 people in 180 countries taking the class.

"Feel free to pass the word to others you may know who might benefit from more formal study of medical neuroscience and the structure/function of the human central nervous system." - Dr White:

I could not have imagined how to reach that number of people for them to learn about the cause of positional related headaches, that Karen suffered from for nearly two decades,.


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Karen's Journal:Karen's Journal http://www.kpaddock.com
"I don't want to be ordinary anymore, because of a person like Karen Paddock...I want to be extraordinary." - Maegan: Called to Suffer:Called to Suffer http://www.calledtosuffer.com



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