Thoughts from a Vitek Patient

I recently read an article in the Sept 2021 issue of Journal of Pain Research about the Vitek disc replacement (otherwise known Proplast-Teflon Interpositional Implants). From here, on, I will call them the Vitek disc or disc replacement.

The article, Persistent Pain Following Proplast-Teflon Implants of the Temporomandibular Joint: A Case Report and 35-Year Management Perspective, was a case study about a patient who received bilateral Vitek discs in her early 20s. She has since endured multiple surgeries, several invasive procedures, some for just two hours of relief. She suffered from depression and suicidal ideation as well. The woman in the case study has suffered terribly as a result of her decision to trust the doctors who likely told her it was a simple procedure and her pain would be gone with that single surgery.

How do I know this? Because I could just as easily have been the patient in the case study. Our histories are very similar, even if the initial cause for seeking treatment was slightly different. It couldn’t have come at a worse time. I was a recent college grad with a degree in journalism. I didn’t know it at the time, but it soon became clear that a career in journalism was the first of many dreams I would have to surrender along my TMJ journey. My descent into TMJ hell began in a physical therapist’s office where I was being treated for severe neck pain and headaches. She worked with me for a few weeks before declaring whatever was causing my pain must be systemic, and her two strongest guesses were lupus or a TMJ disorder.

I got an appointment with the oral and maxillofacial surgeon (OMFS) before anyone else, so I started there. After a brief conversation with the doctor, he was quite convinced my problems were due to the TM disc being out of place. He ordered a special test (this was 1986 – things like CAT Scans and MRI’s were not readily available at the time). The OMFS injected dye into both joints while the radiologist took some sort of scan called an arthrogram. Based on that one test, the surgeon said I needed an operation sooner rather than later. You see, when he injected the dye on the left side, it flowed throughout the joint. On the right side, however, the dye didn’t go anywhere, a sign the doctor said meant the disc was displaced and preventing me from opening my mouth properly. Having had a few surgeries elsewhere in the body that were lifesaving, I went into it with a sense of trust and “he’s the doctor; he wouldn’t recommend it if I didn’t need it”—or would he?

Within a month, my pain was back and at a higher level than before the surgery. I went to see the surgeon who then sent me to another doctor to have a splint fitted so I wouldn’t grind my teeth at night. He also sent me for psychotherapy, because he felt I was simply an over-stressed young mother and if I could calm down, the pain would go away. He couldn’t have been more wrong.

Problems with the Vitek Disc, developed by Charles Homsy, included pain, bone resorption and it triggered giant cell reactions (think of it as like having bone cancer, but instead of dying, you are sentenced to a life of pain and misery). Some patients, like me, had their jawbone rot away, while others had a portion of their skull rot away, exposing brain matter. The manufacturer knew these problems were happening and all they could do was blame the patients for not following instructions. The Journal of Pain Research article mentioned that as early as 1986, “doctors knew of patients suffering from “extensive resorption of bone and marked tissue inflammation” along with “intense pain, jaw dysfunction, and occasionally changes in the bite.” I never wanted to blame my surgeon, wanting to believe that he had been duped like the rest of us by Homsy’s false promises, besides, I trusted him. Finding out that other OMFS’ were discussing these issues with each other and in professional publications, I now have a hard time believing he didn’t already know about these issues and went ahead anyway. Why else would he leave the hospital before a new OMFS could be hired, and without any advice as to where to go to continue treatment. He seemingly disappeared in the middle of the night and went on to develop a lucrative practice at another major hospital in PA, just 45 minutes away.

While this was a case study, and as such, more clinical in nature, I felt the authors were a bit dismissive of the patient they chose for the case history, saying “in hindsight, the primary decision to operate was likely flawed.” I would have to say that any surgery that led to a lifetime of pain, multiple surgeries and invasive, yet ineffective, pain treatments was more than a flawed decision. In the article, the authors try to assign blame for the Vitek disaster. They blame Homsy for his deception, the OMFS’ who looked at it as a way to make easy money (some referred to it as “The Money Joint”) as well as the FDA for their lack of oversight in both the approval process and after problems were first discovered. To some extent, they also blame the patients, saying the patients chose the easy route, rather than a long course of physical therapy. With the benefit of hindsight, the authors say that with non-invasive treatments, it’s a condition that can be managed. People often ask if I sued the manufacturer, but that wasn’t an option available to the patients after Homsy declared bankruptcy and left the country to live in Switzerland. There was a class action suit however, that was supposed to compensate the victims. My portion was $2,000, all of which I had to sign over to my lawyer to cover his costs.

Along with other Vitek survivors, I have lost faith in the forces that are supposed to protect us from disasters like the Vitek disc failure. Three different devices used in reconstructing my face and jaw have been pulled from the market. The Vitek disc was outright recalled, but without any instruction as to what that meant. And while I trust my current surgeon, he has nothing to offer that will make my life better. There is no surgery or treatment that will make my life more bearable. He is very sympathetic to the amount of pain I live with, yet can’t recommend a pain doctor who is willing and able to prescribe the medications that make the pain more tolerable and has a policy of not prescribing pain medications long-term. There are patients who were only recently aware that the Vitek disc was recalled. Mine was removed after one year and had already broken into pieces, some of which were too small to remove. The fragments left behind, began eating away at my jawbone, and continued causing damage for years to come. Imagine what these patient’s joints are like 30+ years after implantation!

My Vitek surgery is one of the greatest regrets of my life. Like the patient in the case study, I have had 13 major surgeries (some lasting as long as 10 hours and included a stay in the ICU). Like her, I have contemplated suicide more than once, (and still often find myself praying for a terminal illness so my family won’t think I gave up). I have suffered nerve damage to my eyes and my lower lip and chin and I haven’t been able to feel my husband’s kiss for over 30 years. Worse yet, my children have never known a healthy mom. And it has taken me years to forgive the 26-year-old me for trusting the surgeon. It took a long time to realize there wasn’t any way to check what he was telling me because it was before the internet and before the support groups that now allow patients to exchange symptoms and experiences that could protect us from this disaster. What is obvious to those of us who are Vitek patients, is that when news of the Vitek disaster became public, the dental community abandoned us.

In the article, the authors describe what the patient in the case study takes to relieve her pain, which gives her minimal relief. They don’t offer any suggestions for pain management for other patients who are suffering just as much, maybe even more. After my primary care doctor abruptly left his practice over a year ago, I was left to fend for myself to find another doctor to manage my pain. While what I take now helps to some extent, I had much better pain relief when my primary provider was in charge. And along the way, I met more than one provider who told me I needed to learn to live with the pain because you can’t make it go away and pain medication just leads to addiction. I have been living with it. I’ve lived with the ever-increasing pain for 36 years. And each procedure that was done to fix the damage from the Vitek disc left me with a new level of pain to live with. I’ve known several Vitek patients who have died, either through suicide or from side effects of their treatment (like liver damage from OTC pain meds). Some have literally wasted away because they couldn’t take in enough calories. As most of the Vitek patients pass the 60-year mark, there are fewer of us each year. With every one of us that dies, that is one less patient that the medical and dental profession has to deal with. It’s hard not to feel like they are waiting for us to die.