A Coma Was Her Last Resort

DEEP SLEEP: Would you risk a five-day, ketamine-induced coma in hopes of dousing the pain of RSD/CRPS? (Pixabay.com)

Her medical career halted by chronic pain, Shannon Stocker chose a high-risk procedure involving a powerful anesthetic, a five-day coma, and a do-or-die medical-tourism journey to Mexico.

Shannon Stocker was 30 years old and in her last year of medical school when she first felt the pain. It started in her right arm and eventually became so debilitating that this newly minted M.D. was forced to put her medical career on permanent hold.

“I had nothing left to lose. Either I was going to wake up better, or I wasn’t going to wake up. And either scenario was better than the one that I was in.”

Over time, the pain spread throughout her body and felt as if she’d been doused with gasoline and set on fire. Even ordinary sensations—raindrops on her skin, a gentle hug—became unbearably excruciating. Woundlike ulcers and fiery discolorations riddled her skin. After seven years of suffering, she found herself relying on a wheelchair and continuing to spiral downward. Some doctors predicted she’d be dead within two years.

The cause of her horrifying symptoms was a neurological disorder called reflex sympathetic dystrophy, or RSD. Many doctors also refer to it as complex regional pain syndrome, or CRPS. Why RSD/CRPS strikes some people but not others is a mystery. Typically, it’s sparked by an injury that inexplicably throws the body’s nervous system into chaos. This disease then unleashes pain so severe that RSD/CRPS outranks every other medical condition on the McGill pain scale, including cancer pain and amputation.

After exhausting all other treatment options, she decided to gamble on a high-risk medical procedure called ketamine-coma therapy, previously administered to only a few dozen people worldwide. To undergo the procedure, she’d need to travel to a hospital in Monterrey, Mexico, because the FDA hasn’t approved ketamine-coma therapy for use in the U.S. Given the procedure’s experimental status, riskiness and five-figure cost, no physician in the U.S. even offers it.

In Mexico, her doctor would use massive doses of ketamine—a drug best known as a horse tranquilizer and as a powerful hallucinogen often sold on the street as “Special K”—to put Stocker into a coma lasting five days. Just as you might turn a glitchy computer off and then turn it back on again to make it work properly, Stocker hoped that the ketamine coma would likewise reboot her nervous system and thereby dial down the pain.

But during those five days, ketamine also would unleash hallucinations so fearsome that she’d need to be tied to her hospital bed to keep from thrashing around and hurting herself. Going into it, she knew that the treatment and related expenses would cost $40,000. But despite some promising research data, the treatment came with no guarantee that it would work—or that she’d even survive it.

Today, nine years after she awakened from the ketamine coma, we talk to Stocker about why someone trained as a physician would seek out a treatment that American doctors don’t even perform; how she stayed hopeful during those many years of agony; what lessons this doctor-turned-pain-patient learned about navigating the healthcare system that the rest of us in chronic pain need to hear; and lastly, how she’s doing now. (Quick hint: she’s given birth to two children since the coma!)

Today, Stocker talks about:

•  Why she saw more than 30 doctors before finally receiving an accurate diagnosis—and why it came not from a physician but from her non-doctor husband Greg, a salesperson who exhaustively researched her symptoms and advocated on her behalf

•  Why physicians often act dismissively toward people with chronic pain—and how patients should respond

•  Why she signed up for an experimental medical procedure so risky that she might not survive it—but was unfazed by that risk

•  What it was like to travel outside the U.S. for treatment

•  How a supportive family member can play an indispensable role in helping a person in pain hang on to hope

•  What she does nowadays to keep her pain in check—and how she thwarts occasional flare-ups

Interviewee:

Shannon Stocker is a mom and writer who writes books for children. In September 2017, her writing will be published in Chicken Soup for the Soul: Dreams and the Unexplainable. And in 2019, Sleeping Bear Press will publish her first picture book. She also publishes a blog and other nonfiction that explore a variety of topics, including her battle with chronic pain. She and Greg kept a day-by-day blog detailing her experience of undergoing ketamine-coma therapy in Mexico. In addition, she’s on the board of directors of the International Research Foundation for RSD/CRPS.

Stocker’s Ketamine-Coma Transformation:

At first glance, the women in the two videos below appear to be two different people. The first video shows a pain-wracked invalid. The second shows a vibrant singer performing in front of an audience. In fact, they’re both videos of Stocker—the first taken shortly before she underwent ketamine-coma therapy; the second taken seven years later.

It’s hard to imagine a more vivid example of what can happen when someone in chronic pain latches on to an effective treatment. In her case, ketamine didn’t just trigger an improvement. It triggered an astounding transformation. To see the change for yourself, click on the “before-ketamine” video (“Part 1: Pre-coma Evaluation”) and “after-ketamine” video (“Part 3: Dr. Stocker ‘Live’”) below:

Shannon Stocker, shortly before undergoing ketamine-coma therapy. (Source: Anthony Kirkpatrick, M.D., Ph.D.)

Shannon Stocker, seven years after undergoing ketamine-coma therapy. (Source: Anthony Kirkpatrick, M.D., Ph.D.)

Straight from the lab:

Just how strong is the evidence that ketamine can reduce the pain of RSD/CRPS? And what other treatments might help relieve it? Scientists have been asking those same questions. Explore this sampling of their research to date on ketamine and other options:

•  This 2015 systematic review article evaluates 45 studies and case reports involving the use of ketamine to treat RSD/CRPS.

•  This 2014 review article evaluates the quality of the published research involving the use of ketamine to treat RSD/CRPS, along with providing an overview of how ketamine has been used historically, both medically and illicitly.

•  This 2014 review article evaluates the benefits and risks of using ketamine in the treatment of chronic pain, explains the neurochemical changes that can produce neuropathic pain, and suggests how ketamine may interact with those changes to reduce pain.

•  This 2013 review article draws upon hundreds of published studies to discuss the merits of various treatment options and to identify key indicators for diagnosing RSD/CRPS.

•  This 2013 Cochrane Library systematic review article compiles data from 19 earlier review articles involving randomized clinical trials to assess various RSD/CRPS treatment options.

•  This 2008 German open-label Phase II clinical trial (20 individuals with RSD/CRPS were treated with ketamine-coma therapy and tracked for six months) reports significant pain relief and improved quality of life.

•  This 2007 study involving nine American patients with RSD/CRPS who underwent ketamine-coma therapy in Germany found that the procedure significantly reduced their pain without causing any adverse cognitive effects when measured six weeks post-coma.

For more information:

•  The RSD/CRPS Treatment Center and Research Institute and the International Research Foundation for RSD/CRPS, based in Tampa, Fla. Both were established by Anthony Kirkpatrick, M.D., Ph.D., a physician who treated Stocker on an outpatient basis in Tampa and who also coordinated her treatment in Mexico.

•  The Reflex Sympathetic Dystrophy Syndrome Association (RSDSA)

•  The National Institute of Neurological Disorders and Stroke’s “Complex Regional Pain Syndrome Fact Sheet”

Update: 

According to Dr. Kirkpatrick, no medical institutions in the United States, Mexico or elsewhere are currently performing ketamine coma therapy on a routine basis.

Music:

Our theme music is “Gentle Storm,” composed and performed by Betsy Tinney (betsytinney.com).

Wish other people in chronic pain knew about Painopolis? To help spread the word, please post a review about Painopolis on Apple Podcasts. We’d be forever grateful.

8 Responses to “A Coma Was Her Last Resort”

  1. Anthony Kirkpatrick MD PhD

    Shannon Stocker MD provides us with an important perspective on complex regional pain syndrome and doctors.

    Reply
  2. Dinah Magno and Son Joseph Gutholm

    My son Joseph Gutholm had RSD and went to 36+ Doctors and all they did was make it worse, gave him the highest pain drugs that left him still in pain and unable to function. They put in electronic stimulators under the skin and did not help and caused infection. I found Doctor Kirkpatrick after a lot of research and we made an appointment to meet him, the Ketamine was used for 5 days, low dose and then higher – In the U.S. you cannot go completely into a Coma but did it each day. This was in January of 2012 and he is back working and it saved his life, without it the pain would of gotten unbearable. Everyday I thank Dr. Kirkpatrick for helping my son and giving him back his life. The Coma needs to be legal in U.S. and then Insurance would help. D. Magno

    Reply
    • David Sharp, editor, Painopolis

      I agree wholeheartedly. It’s time to make ketamine-coma therapy available in the U.S., at least on a clinical-trial basis. There would be no shortage of volunteers. If there’s no profit motive for drug companies to fund those clinical trials, then the U.S. government needs to fund them. Lives are at stake.

      Reply
      • KnoRSD@Gmail.com

        I have not watched the movie- but truly look forward to it. I believe (actually know)I was one of the people who were supposed to be part of the Germany trials. I had to go a different road and would really love to speak or “compare notes”…I find the follow up- more or less the post procedure and follow up has been confusing. I would love to see how other people did/felt about the various procedures, what they feel worked best for them and if any body is looking for help or information I gladly will talk to anyone. I saw the absolute best in humanity, I saw the worst. I had my husband and best friend by my side- I’m lucky. I feel as patients thrown into this new world where Dr.’s don’t understand, I.g. I don’t understand it, it doesn’t exist, the lack of information and a structured “how to” is desperately needed. I’m sorry you had problems with the hallucinations, etc. I prepared like a Jedi and never had a problem – but – getting to place where
        1) people understand and don’t demand
        2) the backslides and injuries aren’t a concern
        3) the highs and lows and the need for a regimen (obviously a guide line to be , as each patient is, tailored to the patient. For me it wasn’t the preparation or the procedure, rather the follow up that has left me in a quandary time and again. We need to speak now for those who are losing there voice. I know you understand this. It’s scary, it’s real and I don’t want to ever feel that way again. Any one interested in comparing notes and helping one another as well as other patients please- it’s time to take this disease from being an orphan to being understood and setting up a journey past the treatment – I am at the point where I need to know where others are with this and am desperately seeking tips and discussions- what stuck to the wall for you? We have to be our own advocates, we need to be blessed to have someone who will take the journey and we need to be guided to a multi discipline follow up treatment. If not for current situations, but then for others who are scared right now. I also want to speak to others about their etiology even and how the “torture” stopped and how you may have found yourself suddenly walking after a second dose of a 12 day treatment after not walking for years. The misdiagnosis- I’ve been used by Dr.’s for there own agendas- I have also had the pleasure and privilege of being taken into the care of a Dr. who had stopped working with the Ketamine treatments not because it didn’t work. No, rather, patients were beginning to roll over out of frustration- we locked horns on our first meeting but I needed to know he was in this- he needed to know the same. So, please, it’s time for us, the seasoned vets to not only take steps in ensuring we don’t back slide, we get correct emotional and physical support and have an end goal. During the journey it’s too easy to wake up one day and find yourself wondering how did I get here? How did this happen to me? This is, for me, the next steps as well as learning limitations (I have a problem with this one) and not swinging the pendulum from running on a good day, to taking a fall and finding myself right back in torture. The mistakes….did anyone ever do anything in regard to Dr’s who, out of there own lack of understanding or empathy project that Negatively right back on you? Have you been taken advantage of?? Have you found a hero who came out of early retirement- done with treating this disease, to taking me in and literally performing nothing g short of a well orchestrated ballet that was amazing to watch, priveledged to be part of….but for whatever reasons lost touch? We need to help each other out. You pay it forward. The positives and bury the negatives along the way. What we could learn from each other- as I truly feel no one understands this disease better than us patients- if I can’t help change even one life other than mine I have failed to truly appreciate what has been done for me, how damn lucky I am and that constant concern of where am I at, in the big picture, where am I at-where should I be heading and what does the future hold is not just my concern but my husbands- I need to work at it and I would really like to give him back some of the hope he bestowed on me over the years. I am especially interested and maybe in need of some happy endings, new beginnings and a general feeling of I got this, we got this. We are a small but strong community- I’d like to meet some of my fellow journey – people
        I truly hope others feel this way at and would be interested in at least talking…I’m ready for closure (if it will ever exist) and moving. Moving and moving. I look forward to your film and truly invite anyone who has dealt with the years, the torture, the regaining of your life–did you find what you were looking for?
        Thankful and hopefully your fellow journey taker and sadly sufferer from RSD- it gets better – but how much, how quickly and can we really look at case law and create a regimen not just for ourselves but for everyperson you saw, alone, confused, maybe better off, maybe worse off but you can’t compare – we wouldn’t compare who had it worse- who had it better…Please, let’s talk!!

        Reply
      • Anonymous

        Neridronic acid works! I’m in the clinical research study and I feel none of the symptoms of CRPS like I did for 10+ yrs. Thankful to have gotten in.

        Reply
  3. Mildred Pulley

    I have rsd and have for over 12 years, I wish more physicians would do this therapy as I would gladly volunteer for the trials.

    Reply
  4. Jenn

    I have had RSD for almost 30 years. I would love to try ketamine therapy!

    Reply

Leave a Reply

Basic HTML is allowed. Your email address will not be published.

Subscribe to this comment feed via RSS