How did I get here? This is a question I have asked myself many times over the last eight years.
Even before I became a health care worker, I have always been actively involved in my own health care. I asked questions, I sought second opinions, I encouraged my loved ones to do the same. And yet the one time I deferred to a doctor against my own better judgment, I set into motion events that may change my life forever.
In 2010, I presented with bilateral deep vein thrombosis (DVT), or blood clots in both legs. My hematologist obtained a CT scan which showed possible advanced ovarian cancer.
Doctors scheduled me for an emergency hysterectomy and placed a retrievable IVC filter to prevent blood clots from shooting into my lungs. “Don’t worry, we can take it out after the surgery,” my doctor said when I expressed concern about having the device put into my body.
Fortunately, I did not have cancer. Such a relief! But my medical problems were not over.
Still reeling emotionally from the various diagnostic imaging, appointments with specialists, surgery, and the healing afterward, I asked my doctor to schedule a removal of the filter.
The doctor I had at the time was a domineering, condescending man, and with my health issues, I allowed him to dictate what I should do. Be assured regardless of what I just said, I do not have an issue with doctors. In fact, I work at a hospital as a Sonographer, but I know that many times the difference between life and death lies with the doctor treating you.
Long story short. The IVC filter stayed.
Where Am I Now?
Over the years, I began to develop mild to moderate sharp pains in my abdomen. My pulse would periodically spike for no apparent reason. I had a CT scan done in 2015 which showed, as I had begun to suspect, that the filter was completely perforated.
This means that each of the prongs and the apex (the hooked top of the device) were actually outside of my IVC. The IVC, or inferior vena cava, is a large vein that carries deoxygenated blood into the heart. It’s where doctors place the filter to catch any blood clots traveling from the legs toward the lungs.
One prong had been rubbing on the anterior portion of a vertebrae causing a large bone spur. Another prong was sticking into my duodenum. The latter is the cause of my pain. I renewed my requests to have the filter removed.
I spoke with my regular doctor, my cardiologist, surgeons at the hospital where I worked, and surgeons at Duke Hospital — all to no avail. Every doctor recommended despite the problems and potential complications that I leave the filter in place.
No doctor knew how to remove it. No one would even consider performing the surgery due to the potential risks to me and of course to them professionally.
I researched IVC filters, perforation and removal. I learned that over the years there have been many papers and studies published that indicated that the benefits of the filters were highly debatable and generally not worth their risk.
For example, a 2011 assessment Dr. Judith Walsh, Safety and Effectiveness of Inferior Vena Cava Filters used to Protect Against Pulmonary Embolus, says:
“Inferior vena cava filters have been widely used and it is surprising how few studies have evaluated their safety and efficacy … These studies showed reduced recurrent PE but an increased risk of DVT with IVC filters, and there was not associated reduction in mortality. Although IVC filters are commonly used for prophylaxis in high risk patients including trauma patients, neurosurgical patients, patients with malignancy and super-obese patients undergoing surgery, whether or not their use leads to a net benefit is not known. It is recommended that the use of IVC filters to protect against pulmonary embolism does not meet CTAF criteria 3, 4, or 5 for safety, effectiveness, and improvement in health outcomes.”
Additionally, virtually ever paper and study I found insisted that retrievable IVC filters be immediately removed after surgery to prevent complications. Complications from IVC filters include migration to the heart or lungs, DVT, filter fracture, perforation, pseudoaneurysm, GI hemorrhaging, sepsis, pulmonary embolism, ventricular arrhythmia, cardiac tamponade and heart attack.
How I wish I had stood my ground!
I am currently seeking an appointment at John Hopkins where they are developing techniques to remove IVC filters safely. I find myself dealing with a lot of fear about this surgery.
I am angry that I must choose between possibly dying now or possibly dying later. I am angry for my family that they must worry about this as well.
I am forcing myself to move forward with my investigation into John Hopkins to, if nothing else, remove this sword of Damocles from my life once and for all.
What I want to leave you with is the importance of research. Learn everything you can about any medical device your doctor is recommending.
If, like me, you find yourself overwhelmed with a medical situation, empower a loved one or friend to do this research for you.
Get second opinions on medical devices, the placement of them and long-term complications. Look to organizations such as Drugwatch, for example. These folks make it their lives work to gather such information together for us.
Knowledge is power. Whether you opt for the device or not, you will be glad you spent this time increasing your knowledge.
I regret very much that I did not take these steps, and if my story inspires you to act different from how I did then my error in judgment will not be entirely in vain.
Disclaimer: Thoughts and opinions expressed in this patient story are strictly anecdotal and should not be taken as medical information or advice. Views of the interviewee do not necessarily reflect those of the author, editor or Drugwatch.