John R. Zaleski, PhD, CPHIMS

A recent Kevin Pho entry in KevinMD post on chronic pain prompts me to write this blog entry. The title of the piece is “Doctors and patients cannot win when it comes to chronic pain.” In this piece, Kevin Pho explains the conundrum facing physicians regarding the treatment of chronic pain: “On the one hand, chronic pain drugs can lead to abuse…[o]n the other hand, chronic pain patients are often inadequately treated.”

Source: http://www.chiropractic-books.com/images/Pills.jpg

The author continues by stating that “only 5 of the country’s 133 medical schools today have required courses on pain,” and that “more patients suffer from chronic pain than those with diabetes, cancer and heart disease combined,” citing the Institute of Medicine report, “Relieving Pain in America” which found that 116 million Americans report suffering from chronic pain. This same report tallies the cost to both lost productivity and treatment in the neighborhood of $635B.

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What captured my interest in this commentary is that I have been a chronic pain sufferer for approximately 5 years. In my mid ’40s I began experiencing problems in terms of pain in my throat, on the right-hand side. At first I thought nothing of it as it seemed to appear immediately following a particularly nasty cold I was having.

However, the condition never went away. I proceeded for months and months…into about 2 years with this persistent, nagging pain on the right side of my throat that manifested itself in not only that but a terrible itching sensation in my right ear.

It impacted everything I did, from working to sleeping.

Finally, I went to my primary care provider, who could find nothing visibly wrong in my throat. I was referred to several ENTs. The first ENT I found concluded that my problem may be due to latent post nasal drip, and as I had a very bad deviated septum problem, I consented to surgery to correct it.

After putting up with the surgery, the recovery, I was vastly disappointed to learn that this did not fix the problem. I re-visited this ENT, and other ENTs who concluded that I had no problem and should see either a psychiatrist or a neurologist to address my pain! In the process, I had several CT scans and an MRI. Nothing was visible and nothing appeared to be wrong: no tumors, no sores, tonsils were fine. The Neurologist whom I saw prescribed a pain medication which did not work but caused me to spend my days in a daze (no pun intended).

After seeing about half a dozen specialists and getting nowhere fast, I decided to take  the job on myself. The Internet is a great source of both good and bad information–the wild, wild West, as it were. However, it can provide key links and tips as well as clues. In researching the problem myself I found a description of a condition called Eagle’s Syndrome. Eagle’s syndrome relates to the stylohyoid process, illustrated in the following figure. To a layman, the calcification of these processes can extend them and cause them to interfere with nearby nerves, which can have effects very similar to those I was experiencing. Unfortunately, the “cure” is rather empirical, and the response in any two individuals can be different. Treatments range from surgical shortening of the processes to drugs to injections of steroids at the site.

Source: http://1.bp.blogspot.com/-JYyLxmzc0FY/TmYUTQdfo8I/AAAAAAAAAkY/tH8wgTd2qO8/s1600/styloid+process.jpg

As shown in the figure above, the stylohyoid process on the left hand side of the skull is the pointed, bony protrusion. There are two of these: one on left, one on right. Author’s note: I will upload my own films on this once I have a chance to pull them off of the CD. The above is a placeholder.

I had made a self diagnosis of this and had taken my research to my original ENT who had said that he had failed to see the images of the stylohyoid process on my CT scans. However, as I later learned, it is often difficult to see these unless the order is written to focus specifically on the lateral view of the skull!

At this point I was certain I had diagnosed my problem, but was having difficulty finding an ENT who would take me seriously. Most of my local ENTs were telling me that the condition was extremely rare (which I learned from my research) and, therefore, highly unlikely.

I decided then and there to go elsewhere.

I went to Johns Hopkins. I researched the Otolaryngology clinics of major healthcare systems in my general vicinity. One was PENN and the other was Johns Hopkins. I live equidistant between the two. I found Hopkins to be most responsive and found a surgeon who was able to see me within 30 days of my call. For those interested, I will be happy to pass on his name if you send me a private email to that effect.

I visited with my surgeon and explained where I had been and the research I had done and he evaluated my self diagnosis by probing the upper surface of the palate behind (anterior) to the right tonsil. The effect was pain. He concluded that my diagnosis was correct. However, to provide evidence for this I needed a CT to verify. He wrote an order for a CT with a very specific view to focus on the stylohyoid segments–this he included in the order to ensure they were not missed. A later read of the CT indicated that the right-hand stylohyoid segment was indeed longer than the left and that it was probably impacting the glossopharyngeal nerve, thereby resulting in the pain and discomfort I was having.

We scheduled surgery.

I asked the surgeon to take photos during the surgery. A postoperative review confirmed what we had seen in the CT scan.

It had taken me a while to recover from this as the surgery needed to be performed on the exterior due to the hazards associated with major arteries going through the mouth. However, the improvement was and still is apparent to me. The improvement was an order of magnitude better than it had been.

I will never be 100% improved in terms of chronic pain because the surgery and the effects of the stylohyoid process did permanent damage to the nerve–resulting in chronic pain. But the improvement was enormous. I still have chronic pain, much less now, which can be managed through effective use of drugs.

This whole process, from initial symptom to solution, took 5 years. Many others suffer with chronic pain for decades. It is difficult to express from someone who has and experiences chronic pain to those who do not what this does to you. The continual experience of pain colors the very way in which you view the world: simple things that should be enjoyed; time with your family; simple acts are made less happy or even unbearable all together. It is a form of torment and it is understandable why depression and suicides are experienced by sufferers of chronic pain.

My main message is: stay focused, keep the mind busy on addressing approaches to solving the problem. Do not merely listen to a healthcare provider. Do the research. Dig for information. And, ultimately, seek an advocate. As in my case, in which a problem was identified that affects less than 5% of the population, just because it is rare does not make it impossible.