This is a cautionary tale about rare medical complications. As many people who follow my blog posts know, I had spinal surgery in mid-December. After undergoing many, many procedures including prior surgery, acupuncture, chiropractic, massage, yoga and every other therapeutic modality you can think of, it was the consensus of my doctors that the only remaining solution to address my chronic pain was to fuse two lumbar discs at L4-5 and L5-S1. I had avoided this for over 7 years while trying everything else, but the hope of regaining my former quality of life finally moved me to opt for surgery.

Unfortunately, my surgery was followed by an unexpected medical complication considered “rare” (according to the available medical literature I was able to find). It’s a reality that surgical complications and drug side effects sometimes occur. Still, it concerns me that, as patients, we do not always have the information we need to recognize and report these adverse events. Interestingly, patient-reported outcomes are now, thankfully, becoming part of numerous drug trials, yet many patients like me don’t know where to report their own experience.

This presents a dilemma for me and all patients because it means that, unless the medical care provider reports the information in a way that it will be aggregated and made widely available to both doctors and patients, our literal pain and suffering may not be counted. These unreported events result in information that may under represent the true risks. How is a patient and, for that matter, a doctor, to know the possible risks and what to watch out for—especially in cases of rare complications—if that complication has not been previously reported with any accuracy in the medical literature? If it goes unreported, it goes unpublished.

But back to my operation. It was decided by my spine surgeon that I was a good candidate for an anterior (front of body) approach to the two-level fusion (ALF). If you follow golf, Tiger Woods had the same procedure to fuse one level of his spine. Going in from the front requires a vascular surgeon to make an incision in the stomach, move all of the organs out of the way, and basically expose the spine for the spine surgeon to replace the discs. During the operation, if the spine surgeon feels the screws won’t hold the new discs in place on their own because of soft bones, the patient is flipped over and additional implementation is added to secure the fusion. I understood all of this going in and was delighted to wake up in recovery to find that I had only needed the initial anterior surgery. This from-the-front approach is preferred since the spinal muscles aren’t cut, resulting in less pain and a quicker recovery for the patient. Because I’d had a prior neck surgery in which those spinal muscles had been cut, I was onboard with this conservative approach!

Following surgery, I was thrilled to be up and wandering the halls of the hospital the very next day and home and walking around the block in less than a week taking only Tylenol for pain. I considered the surgery a huge success until Christmas Day, eleven days post-surgery. I was suddenly racked with excruciating pain under my ribs and in my back and diaphragm. The pain was accompanied by vomiting that occurred when I tried to drink something. My husband rushed me to the emergency department at a nearby hospital (which is also a regional trauma center) and I was immediately given pain medication and triaged care. The scans and tests the hospital ran revealed a very large accumulation of fluid in the retroperitoneal area of my body. My organs were being crushed by this fluid and that was the cause of my pain.

After being re-admitted to the hospital, the trauma team determined that a drain needed to be inserted into my abdomen and I was ultimately relieved of 750ccs of fluid (as my family pointed out, this is the same amount as a bottle of wine!). The following day, while waiting for the results of the fluid analysis, the drain was emptied frequently and the fluid measured by the nursing staff. For the following four days I was in the hospital, 1000ccs/day of fluid was emptied from this drain while teams of doctors worked to reveal the source. I was allowed to go home for New Year’s weekend and empty the drain myself, with the promise that I would be back in the surgeon’s office at 7:30 a.m. on January 2nd.

I continued to drain 1000ccs/day of fluid and so it was that I found myself in the surgeon’s office being told that the drain needed to come out and something else must be done. Because I am immune suppressed due to the medications I take to control my lupus, the drain itself could be a source of infection (and an infection I did not need!). It was determined this was lymph fluid I was producing and that most likely a microscopic lymph channel (one of the tubes that connect our lymph nodes) had not been moved out of the way before the spine surgery. In other words, a tube had accidentally been cut. This complication and the fluid accumulation that results (lymphocele) is what is identified as “rare” following the type of surgery I had.

As a patient advocate, I speak frequently to patients and medical professionals about lupus and other diseases. Part of my advocacy work includes raising awareness in order to prevent the preventable and educating patients. Patients need access to accurate information in order to make informed decisions about their own treatment and care. Had I known more about the possibility of surgical error and post-surgical complications and symptoms, I might have been better prepared to deal with the aftermath; I might have gone to the hospital sooner and suffered less post-surgery. Yet I believe my experience was not uncommon.

My saga has a relatively happy ending. I had a second surgery called fenestration to reroute the fluid that was collecting in my back to flow into my abdominal cavity where my body can learn to absorb it. I am two months post-op from that second surgery. I still have lymphedema in one of my legs and wear compression hose, take a diuretic, and lie with my feet elevated as often as possible. I have been told this might take a year to resolve. It is now an inconvenience and nothing more. As for the spinal fusion? It was a huge success and I have very little of the original pain. My quality of life is once again where I want it to be and recently included a flight from Tampa to San Diego with very little pain. That would not have been the case before the fusion.

I was fortunate this time because I recovered; I’m okay. I know I can’t single-handedly prevent other patients from going through an experience similar to mine, but I do hope that in sharing my story with others I can make a small difference. Mistakes do happen; complications arise. Yet in raising awareness by sharing our patient experiences, we tilt the odds of a favorable outcome in our direction because knowledge really is power. I would welcome a new era of informative public service announcements and education directed at teaching the general public (because everyone’s a patient at some point) how to report medical complications. Only then can a truer picture of medical errors, complications, and side effects be developed to provide patient consumers the information they need to make informed decisions.

About Cindy Coney: Ambassador of hope and author of The Wild Woman’s Guide to Living with Chronic Illness, Cindy Coney is a nationally acclaimed speaker, trainer, human resilience expert, and philanthropic force. Dedicated to helping both children and adults achieve optimal health and success, Cindy has taught thousands of people to move beyond coping with limitations to recapturing joy and fulfillment in their lives.

Diagnosed with lupus in 1980, Cindy has since driven a race car 124 miles per hour; completed the Chicago Marathon; championed countless nonprofit organizations; presented to the World Lupus Congress as a keynote speaker; and shared her inspiring, empowering story from Belize to Baltimore.

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