Informed decisions require weighing all factors.
Don’t get caught in a bubble of confusion—
you might not escape (at least not on foot).
In Part 1, When the answer is YES, I promised to tell you the story of a time seven years ago when I did what a doctor told me to do and never should have. This is a long post that contains much important medical information, not only about my specific problem—a ruptured tendon in my foot requiring reconstructive surgery, but about what caused it—overuse of prednisone.
But the larger problem was this: I failed to follow “The Patient Path” to informed decision-making regarding my own healthcare and well-being primarily because I was busy . . . and I was impatient and just wanted to feel better and get on with it.
This mistake is partly the reason I started this blog last November, after learning that I had endometrial (uterine) cancer—to help myself and others learn to make good healthcare decisions. Don’t let others—even experts—make decisions for you without your full knowledge and informed consent.
By all means get expert advice—but always do your homework before following it.
As a result of not being on “The Patient Path” of informed decision-making back in 2007, I suffered serious consequences after following the advice of an uninformed physician. A friend visited this doctor recently, and, sadly, it sounds as if he is still in the dark about some things—and chooses to stay there. At the time I was his patient, he proudly proclaimed himself to be a non-computer-user. He said the same thing to my friend recently. As it turned out in my case, though, he also didn’t seem to know his way around Gray’s Anatomy—the print version of the classic medical text. But his attitude was just one of the problems that caused me to come very close to not being able to walk again.
It started in October 2004. It had been just 10 months since my second marriage and move to Flemington, NJ and only days before my business trip to Varenna, Italy, a charming town on Lake Como. I was heading there to attend an early planning meeting for an academic conference the following spring. Despite the challenges of organizing a scholarly meeting of biochemists in Europe and also preparing to become the developmental/managing editor of the book based on the conference topic of the essential nature of water, I had a lovely stay. Except for one thing: I was limping around town because of a pain above my left ankle.
After returning home, I consulted an orthopedic surgeon that specialized in hands and feet. He diagnosed tendinitis and referred me to a rheumatologist. I wish he had referred me to someone else, because less than three years later he had to refer me to an orthopedic surgeon for a specialized foot-reconstruction procedure.
I am not an uninformed or unintelligent person. Yet I made a bad mistake based on (temporary) ignorance and impatience. I was too busy—too busy learning to become a second wife in a new house in a new town, too busy organizing academic conferences and editing scholarly books, too busy trying to find time to do something other than what I needed to do for everybody else—to take care of myself. So I turned my care over to a doctor that gave me prescriptions that, after trial and error, made me feel better. But he also gave me some very poor advice. Sadly, I was too busy to do my homework, leaving me unprepared to make informed decisions about my own health.
The working diagnosis back in January 2005 was inflammatory vs. osteoarthritis or tendinitis of the left ankle. I also had, and still have, osteoarthritis of the knees. Although tendinitis seemed to be the diagnosis the doctor was working with, the ankle is not as common a site for this condition as, say, the shoulder, elbow, or wrist.
I mentioned prescriptions. The rheumatologist experimented with the following drugs:
6 NSAIDs—nonsteroidal anti-inflammatory drugs, including
- Etodolac (Lodine), 300 MG twice a day
- Sulindac (Clinoril), 200 MG twice a day
- Oxaprozin (Daypro), 600 MG twice a day
- Diclofenac Sodium (Voltaren), 75 MG twice a day
- Nabumetone (Relafen), 750 MG twice a day
- Piroxicam (Feldene), 20 MG three times a day
2 DMARDs—disease-modifying anti-rheumatic drugs, including
- Hydroxychloroquine (Plaquenil), an antimalarial, 200 MG twice a day
- Leflunomide (Arava), 10 MG once a day
2 Antibiotics, including
- Doxycycline (Vibramycin), a tetracycline antibiotic, 100 MG twice a day
- Sulfasalazine (Azulfidine), a sulfa anti-inflammatory related to an antibiotic, 500 MG twice a day
With the doctor’s knowledge and encouragement, I also tried several supplements, two of which worked for my knees (and that I still take), but not for my ankle, and two of which didn’t work for my knees or my ankle:
- Glucosamine/Chondroitin / MSM (methylsulfonylmethane) twice a day—this has helped my knees
- Omega-3 Fish Oil 1200 MG twice a day—this also has helped my knees, and is also good for the heart
- SAM-e 200 MG twice a day—I couldn’t tell whether this helped back then
- Avosoy ASU (Avocado Soybean Unsaponifiables) 300 MG once a day—I also couldn’t tell whether this helped back then
Over the course of treatment from winter 2005 through summer 2007, we tried all of the above prescriptions and supplements and discontinued most of them because of ineffectiveness and/or side effects, including gastrointestinal (GI) symptoms (particularly gastritis, which was exacerbated by the NSAIDs and is a condition I still have); increased tinnitus, which is often affected by medications (and is also a condition I still have—see the May 19, 2014 post); and ankle swelling.
Two years after I started treatment, while still experimenting with these various drugs, I took a trip to India that winter with my husband to visit his homeland. We were gone a month. After getting back home, I decided I would try exercising that ankle more to strengthen it. It seemed to be working, but by the spring it was obvious that something was wrong. One day while out walking, I felt a smart snap of pain. That was the beginning of the end of my ability to walk normally.
My left foot started collapsing inward, my ankle tilted toward the floor. I was limping markedly. I went to the doctor and said, “Look at my foot! I’m crippled!” He replied, “I don’t disagree with you.”
In response to my repeated questions about the potential side effects of taking prednisone for so long, the doctor would always say that I wouldn’t experience any harmful effects at such a low dose—10 MG a day. Because I was “too busy to take care of myself,” even too busy to fully investigate the ramifications of taking a corticosteroid for more than two years (the recommended maximum timeframe is about two weeks), I allowed myself to be influenced by a doctor who told me he refused to use a computer. Yet I myself didn’t take advantage of a piece of equipment I used every single day for my own work, and I failed to research prednisone sufficiently for myself.
In retrospect, I can’t explain this avoidance behavior on my part, but that’s what it was: Getting the information I needed to make an intelligent, informed decision just seemed like too much work when I was already overburdened. I paid for this lack of decision-making—and it was a high price.
In April 2007, I finally started getting concerned about taking long-term prednisone and decided to stop, cold turkey. DO NOT EVER DO THIS. This was one of the stupidest mistakes I made. Abrupt cessation of a steroid can result in adrenal insufficiency, a condition in which the adrenal glands more or less shut down after steroid use because the drug has taken over the glands’ natural function. Steroids must be tapered off according to a gradual schedule to give the adrenals time to recover and start producing cortisol on their own again. Also called hydrocortisone, cortisol is the principal hormone secreted by the adrenal glands and serves as an anti-inflammatory agent. It is also involved in the breakdown of protein and fat, activates antistress and anti-inflammatory pathways, and contributes to the maintenance of blood pressure. After abruptly stopping the prednisone, my adrenals weren’t working, and I went into a state of extreme fatigue and could barely get out of bed. So I resumed taking the drug and immediately felt better.
By May, not only was I still taking prednisone, but the doctor injected my outer left ankle with a cocktail of two parts cortisone and one part Novocain, saying it would spread to my inner ankle. He didn’t inject the area of concern because of the extensive arteries and nerves there, reminding me that he wasn’t a surgeon and wasn’t sure he wouldn’t hit one of them. He ordered an ankle x-ray, which was normal. He also discussed putting me on yet another drug, methotrexate, which is frequently used to treat cancer and also rheumatoid arthritis. Like prednisone, however, this drug has many serious side effects, and he decided against prescribing it for me because he expected I would be one of 10% of patients that experience GI problems (and I already had gastritis). He advised me to start walking again gradually as the ankle felt better after the injection, which, he said, should provide relief for up to three months. But it didn’t provide relief for even three minutes.
When I saw him a couple of weeks later, he advised against a second cortisone shot because I reported somewhat less pain, although this was because I had been resting. Also, my foot, ankle, and calf were somewhat swollen and deformed. He also reminded me that he wasn’t comfortable injecting near arteries and nerves. I continued to suffer over the following weeks. He had no blessed idea what was wrong with me.Finally, the rheumatologist and I both agreed that I should get a second opinion at the University of Pennsylvania because he thought he was “missing something” (!). But I had to wait several weeks for an appointment. In the meantime, I had to continue the prednisone so I wouldn’t experience another shutdown of my adrenals, but I would have to wean off of it when I found a solution to my foot pain.
He also ordered an x-ray, which showed nothing. So in early July, he sent me back to the original orthopedic doctor, who ordered a magnetic resonance imaging (MRI) study. This showed a big something: I had a totally ruptured posterior tibial tendon, resulting in an extreme case of flat foot—my inner ankle was almost touching the floor because the tendon that is responsible for creating the arch had torn completely. Overweight women (guilty) are at an increased risk of developing this condition, in which the tendon tears and the foot gradually rolls inward and flattens.
MRI disk in hand, I belatedly consulted the second rheumatologist at the University of Pennsylvania, both because I wanted to understand what had happened to me and because my rheumatologist “needed help diagnosing inflammatory arthritis.” This diagnosis would have supported his decision to keep me on prednisone. However, the second rheumatologist saw “no clinical findings of systemic inflammatory disease—no swelling, tenderness, stiffness, or AM stiffness lasting more than 1 hour and no findings on hand palpation of rheumatoid arthritis.” She further said that the ruptured left posterior tibial tendon “could have been caused by prolonged use of steroids (prednisone), untreated tendinitis, excess weight, and flat-footedness.” She was uncertain whether long-term use of NSAIDs could be a contributing factor, but I had to stop them anyway because of the gastritis. Her official diagnosis was “(1) osteoarthritis (wear and tear arthritis) of the knees and (2) tendinitis with rupture of the left posterior tibial tendon, with no evidence of arthritis, inflammatory or osteo.”
When my original rheumatologist called me after getting the letter from the second rheumatologist, he continued to defend his decision to keep me on prednisone. When I reminded him that she saw no clinical evidence of inflammatory disease, he said her letter “wasn’t so emphatic, and some information got lost within it.” He offered to be in the background to run questions by. My impression was that he was probably worried about a possible lawsuit, although I had no intention of putting myself through that in addition to everything else. And it would be very tough to prove malpractice.
The local orthopedic surgeon sent me to the chief orthopedic foot and ankle surgeon at Penn. Both orthopedic doctors had asked me to stand against the wall and lift myself up on the toes of my left foot. Not only could I not do this, my brain didn’t even seem to be getting a signal that such a thing was possible. (I was able to lift myself up on the toes of my right foot.) The Penn surgeon told me that my choice was to wear a leg brace for the rest of my life or to undergo reconstructive foot surgery. When I called my rheumatologist, he said he wanted to ask the surgeon to do a biopsy to confirm inflammatory disease. The surgeon later said he would look around the ankle area at the time of the procedure, but he would not do an unnecessary biopsy.
On July 31, 2007, I underwent a tendon transfer and calcaneal osteotomy of my left foot at Penn-Presbyterian Hospital in Philadelphia. A tendon was removed from the outside of my left foot and transferred to the inside ankle region (leaving me unable to move the outer toes of my left foot). The outside of my left heel bone (calcaneus) was cut and moved over about 1 centimeter toward the inner ankle to better support the repaired tendon. It was held in position with a 2-inch screw (which is still in my heel). For at least six weeks, I would not be allowed to place any weight on the foot. This procedure is considered the most common treatment for this condition and offers highly effective results with a low risk of recurrence. But try using the bathroom balanced on only one foot. . . .
When I reported all this to my rheumatologist, he continued to assert that this “shouldn’t have happened,” and he wanted to know what the operative and pathology reports said, still groping for evidence of inflammatory arthritis. There was none. He reminded me that he wanted me to reduce the prednisone at one time, and I reminded him that he repeatedly told me that such a low dose would not result in any side effects and that he had never told me it would weaken my already compromised tendon. His response was that he wondered why prednisone affected only this one tendon. (Maybe because I had tendinitis there?!)
Then, unbelievably, he further said that he couldn’t even find the posterior tibial tendon in his anatomy book! Why he would admit this is beyond me, and why to this day he refuses to use a computer is even further beyond me. A 0.27-second Google search of “posterior tibial tendon” today revealed 362,000 hits. A 0.33-second Google search for “ruptured posterior tibial tendon” today revealed 58,000 hits. And a search of Google Images reveals a multitude of photos and drawings of my condition and surgery: Google – Ruptured Posterior Tibial Tendon Condition & Surgery Images. Shame on you, Dr. No-Compute.
After surgery, my family doctor managed my prednisone taper, which took a month and went well. Not allowed to do any weight-bearing whatsoever, I used a wheelchair and a walker for two months. I underwent a couple of cast changes, surviving an extremely painful suture removal along the way. When the second cast was removed, I had a wound infection and needed antibiotics. Then I had three months of physical therapy to relearn to walk. While using the walker on an indoor carpet, I fell twice, injuring my right shoulder and sustaining a rotator cuff tear. Painful and limiting or not, I wasn’t about to have further surgery and learned to live with it. All of this could have been avoided.
Seven years later, I have a noticeable scar on my left foot, and the foot doesn’t feel normal. I may need a different shoe size; shoes may fit my foot differently, causing corns and calluses; I may not be able to do anything athletic (as if I ever could–this is not a problem). But I can walk! Just two months of being confined to a wheelchair gave me much greater respect for the disabled. Getting through life is tough enough without having to learn additional survival and mobility skills. However, I will say that many people were kind to me. In public places, I experienced no discrimination—only help. This gave me some hope for humanity.
But I have little hope for doctors who don’t use a computer. And even less for patients who blindly follow their advice.
I do believe I’ve learned my lesson. And when I discovered I had endometrial (uterine) cancer last November, I realized I had to do things differently.
And that’s how this blog was born. Take good care of yourselves. And walk with confidence. Not with a cast, a cane, or a moonboot.
* Also see the various blog posts under “My Current Story – Uterine (Endometrial) Cancer.”