It doesn’t happen very often when Dr. O’Neill, a dentist of 40 years, turns to you and says, “I have never seen this before.” Dr. O’Neill was looking into Hank’s mouth and frowning at the red lesions appearing behind his back teeth on his gums. Hank first brought them to our attention a week previous, and they appeared to be aggressively spreading. “Go get the camera,” Dr. O’Neill said.
We have a bunch of cameras in the office, but the one Doctor was referring to is a Canon EOS Rebel that’s probably almost ten years old at this point, but with it’s macro lens attached, it takes wonderfully detailed shots that are very useful for our diagnostic and records taking purposes. I screwed the lens on and turned on the ring flash and as an afterthought, switched the settings of the camera to CAMERA RAW, the most detailed and high quality setting available and hurried back to the operatory.
The doctor also contacted two oral surgeons in the area for consultation, one of whom performed a surgical biopsy. Hank also saw his physician. Each dental specialist, and his doctor were equally mystified by the red lesions in Hank’s mouth the surgical biopsy would take several weeks to get back, in the meantime, Hank was treated for bacterial and fungal infections to no effect. A mystery was brewing; one that did not sit well with the doctor, meanwhile the aggressive lesions were spreading to adjacent tissue.
These lesions were painful and began to effect the way Hank was eating, drinking, and sleeping. The next week that Hank came in, he was visibly skinnier and he is a tall, well built man, so the amount of weight he dropped in a week must have been significant. The color to his face looked off, more ashen and yellow. One could not help but think that the dramatic weight loss and the aggressive lesions in his mouth were related, and that something was just not right.
The doctor and I had a conversation in his office after Hank’s appointment and neither of us could escape the feeling that for unknown reasons, Hank was seriously ill, and that these aggressive gum lesions are a piece of the puzzle, so before Hank’s next appointment, the doctor and I both poured over medical texts and online resources.
However, taking these photos gave me an idea. Previously, we had been searching terms and symptoms on medical sites to no avail. I easily went through a hundred permutations of ” red lesions on gums“, but for this next search, I was going to only focus on the images. “Red lesions on gums“. “Swollen red gums“. “Bleeding painful gums“. Search results returned picture after graphic picture of different gum disorders. If I was going to find anything that looked like what we were looking at in Hank’s mouth, Google Images ought to have it somewhere!
Looks pretty close, huh?
The problem is the original website’s language was in Farsi, I believe, so making heads or tails about any of the words next to the picture I was looking at was hopeless. Except for the Google translate button on the header of the website!!! I clicked on that, and while the words changed to English they were arranged in such a way as to make the site mostly unreadable except for the terms “Wegener’s Disease” and “Strawberry Gums”. I quickly plugged those terms into Google and got a few articles about Wegener’s and had some hope that we were finally barking up the right tree.
Wegener’s Granulomatosis is a very uncommon inflammatory disease that affects the blood vessels of the lungs, kidneys, sinuses, nose, and to a lesser extent, the ears. Symptoms include general malaise, a low grade fever, sinus, eye and ear infections, loss of appetite, and kidney problems. The disease is fatal, usually from kidney or lung failure if not diagnosed and treated aggressively. Patients with this ailment often think that they are nursing a cold and within a few months rapidly deteriorate. The tests for Wegener’s are sometimes inconclusive and invasive because in a great majority of the patients, the infected tissue lies deep in the sinuses lungs and kidneys.
(Here is an interesting website about the disease, this page, for example tells you how many times the disease was mentioned on the popular medical drama, House, and tells you what episodes they are in. In one episode, they perform one of those invasive tests mentioned.)
Fortunately for Hank, we were looking at the infected tissue in his mouth! It is very rare for this very rare disease to show up in the mouth! After we asked Hank a few questions, such as, “Have you had a nagging sinus infection?” and “Any low grade fevers at night?”, we were reasonably sure that we had our prime suspect. Armed with this information, and an email from Dr. O’Neill to Hank’s doctor at Kaiser, we set them on the path, it was considered important enough to start steroid treatment, and a couple weeks later the improbable diagnosis of Wegener’s Granulomatosis was confirmed.
The treatment was aggressive and difficult for Hank, involving powerful steroids and invasive tissue tests, but his prognosis is good, and the “strawberry gums” are gone. If his condition slipped through the cracks for a few more weeks, he could have been on the raggedy edge of life…or worse.
What happened here, that allowed our clinic to be so involved in this rare diagnosis? Several unlikely things happened in concert that possibly saved Hank’s life:
1. Hank decided to get his teeth worked on. Like most guys, career and every day life take precedence over dentistry, so it had been a while since he considered a trip to the dentist and finally thought it was time.
2. It is possible that work done during his dental treatments allowed the spreading granuloma to migrate from sinus to mouth making the disease present itself in a way that was rare.
3. Dr. O’Neill and staff at Twin Aspen were alert and curious enough to notice fluctuations in Hank’s overall healthy appearance as well as the strange appearance of his gums and researched as well as documented the course of the disease over several weeks.
4. The doctor at Kaiser did not ignore the possible medical diagnosis from a dental clinic.
In this case medical and dental professionals worked together in a wonderfully efficient way. While this type of cooperation between the medical and dental industries is somewhat rare, in this case it had to work for Hank.
It is possible that Hank’s doctor could have ignored our hunch fearing that he could be sued for listening to a dentist with a possible diagnosis. It’s possible that the doctor could have re-referred Hank back to us with the same diagnosis — complications from dental treatment.
Many things could have gone wrong, delaying Hank’s treatment, but happily, they didn’t. His doctor is one of the good guys. Reflecting on Hank’s case, it is amazing how many things went right and how the communication between Hank’s medical providers mixed with the determination of Dr. O’Neill and the Twin Aspen staff ultimately helped save Hank’s life.