I awoke on a Tuesday morning in February 2008, five days after my seventh corticosteroid injection, to a startling and bizarre change. I stood up to get out of bed and found that my knees were swollen and ached with an irritating pain, sort of as if I had slept wrong all night on my legs. Actually, at first I thought I must have done just that. I assumed the issue was simply that I had slept in an awkward position, perhaps twisting my legs and blocking the blood supply and causing them to “fall asleep”. However, after hours of stretching and trying to walk around, I found that I could barely stand up due to severe pain in my knees. After a morning of this weird new knee pain, I made an appointment to see my doctor.

 

Prior to developing the original illness, I was slim, physically fit, and a very healthy guy overall. Thus, I did not consider this knee pain too serious and probably did not respond with as much alarm as I should have. Plus, just recovering from a rare and strange disease affecting the cartilages in my chest, I suspected the knee pain was probably somehow related. My doctor was a bit baffled by the knee pain and did not think these ailments had anything in common. However, he considered how the steroids had helped my chest and thus thought the best treatment for the knee pain was to inject yet another corticosteroid treatment right into my knee with the most severe pain. The pain was centered deep inside the knee joint, so the doctor plunged the needle through the crunching flesh of my knee until the tip of the needle reached the bone. Upon reaching the bone, he walked the inserted needle up my femur until it was deeply between the joint of my tibia and fibula, centered right in the middle of the knee joint. As my doctor pushed the plunger releasing the medication, the excruciating pain of a needle jammed in my knee was suddenly eclipsed by what seemed to be a wash of battery acid flooding around my knee joint. I have a very high pain threshold, but let me tell you, the entire doctor's office heard me scream in pain.

 

Several weeks had passed after those eight corticosteroid injections, yet the pain persisted. In fact, the pain was now so severe that I could not stand up and walk very far without intense pain. Being unable to walk very well, my doctor prescribed the use of a wheelchair to use as needed. As an independent and strong-willed person, the concept of relenting to a wheelchair was very hard for me to grasp and accept. However, I really had no choice but to use a wheelchair until some sort of solution could be reached.

 

Besides prescribing a wheelchair, my doctor also referred me to a rheumatologist, a doctor specializing in joints and soft tissues. On paper, at least, the suggested rheumatologist seemed to be very qualified. She had completed her Doctor of Medicine from the highly regarded Sackler School of Medicine in Tel Aviv, Israel, and had also completed a residency at Yale. However, my experience seeing this referred doctor turned out to be a huge setback. During the office visit to the rheumatologist, I directly told her that I suspected a correlation between the injected steroids and the knee pain because the pain occurred almost exactly at the site of the last injection administered just five days ago. Even with that information and my complete medical history of taking high doses of Prednisone followed by eight injections of corticosteroids all in a very short period of time, this “expert” rheumatologist bent my knees a few times and told me that I was fine. The rheumatologist prescribed some muscles relaxers and physical therapy to treat what she suspected could be “fibromyalgia,” a type of muscle and connective tissue pain. Though, the real insult is that she insinuated I might have ulterior motives and was just a drug seeker tying to get prescribed narcotic pain medications. Of course, this doctor's expert and insulting diagnosis was made without ever running a single diagnostic test and after seeing me for only one office visit. I left this doctor's office feeling angry because she would not listen to me and she had the nerve to question my character without even knowing anything about me.  I felt defeated because the specialist now was basically inferring that all the pain could be just in my head.  Worst of all, the prescribed treatment took away all my pain medication and left me to suffer my way through physical therapy with nothing but my willpower.

 

In hindsight, I know my biggest mistake was that I placed my trust in this rheumatologist's dazzling credentials and did not seek a second opinion immediately even though I knew her diagnosis was wrong. The largest lesson I have learned from this experience is that modern medicine is still a very imprecise discipline where doctors often have to make educated guesses and treat on those assumptions. Furthermore, even the best doctor can have a bad day or completely miss the "writing on the wall" or simply make the wrong guess. In the case of this rheumatologist, she clearly was not aware that high-dose steroids are known to be high risk factors for developing Avascular Necrosis. Heck, even the doctor administering the medications and injections was not aware of the strong risk of AVN. Though I am still a bit angry to this day that a rheumatologist -- someone whose very practice is all about diagnosing joint pain -- negligently sent me on my way without running any kind of diagnostic testing at all. I cannot help but wonder if she had diagnosed my AVN right away, if I might have been a candidate for a simple corrective surgery and thus avoided over a year-and-a-half of suffering. I know I need to let this go and understand that being angry does not solve anything. Still, it is hard sometimes.

 

So I dropped the pain medication and started physical therapy as the rheumatologist prescribed. The pain was intense and unrelenting and I had to struggle every day just to function. Nonetheless, I mustered the strength and carried out all physical therapy regimens to the best of my ability. After about four weeks of diligent physical therapy, it started to become clear that I was really not making much progress. I could not walk or move much better than I could when I first started physical therapy. Not only that, but my functionality had even decreased in a number of ways. For example, I could do sideways leg lifts when I started PT, but after four weeks that particular type of torque on my knees inflicted pain I could no longer bear.

 

After four weeks, my lack of progress was starting to concern my therapist. Then, during one of the PT sessions, my physical therapist sat me down on a table and had me stretch out as normal for our daily routine. After stretching and doing my lifts and bends, the therapist applied a gelatin to my bare knee in preparation to use a type of ultrasonic wand to stimulate blood flow. When the wand first touched my knee, I felt my pain level spike, but I gritted my teeth to ride out the wave. It was then that the physical therapist moved the ultrasonic wand right over my knee joint where the tibia and fibula meet. I cannot recount exactly what happened, but I was told I screamed, my eyes rolled up, and I collapsed to the floor in pain. Being startled, my physical therapist requested assistance from the site nurse. Even after removing and stopping the wand, the pain in my knee was crippling and causing me to simply shriek. Being concerned by both my lack of progress and this very painful incident, the physical therapist wrote a note to my doctor saying she could not see me any longer until my doctor re-evaluated my condition and expressly approved continuing therapy.

 

The incident with the blackout-inducing pain and the lack of progress at physical therapy really concerned me as well. However, there was no way that I would go back to see the original rheumatologist. Thankfully, I am fortunate enough to have really good health insurance that allows for self-referral to a specialist. Thus, I arranged an appointment with a new rheumatologist at Brigham and Women's Hospital in Boston. Doctor I-Cheng Ho, a very kind and brilliant doctor, examined my legs and knees. Within fifteen minutes of entering his office, Dr Ho's diagnosis was that something very odd was occurring and my knees were definitely not behaving normally.  He extremely concerned about, not to mention puzzled by, the amount and level of pain I was describing to him.  He immediately ordered an MRI of the worst knee (my right) to start the diagnostic process and explained he would follow up with more testing if need be. Surprise, surprise -- the MRI results showed multiple large and deep Avascular Necrosis lesions affecting the inner front and both outer condyles of the femur. After receiving these results, Dr. Ho ordered an MRI of the left knee as well.  This MRI of the left knee also showed the presence of several severe and advanced necrotic lesions. Thanks to Dr. Ho, the real root of the knee pain was finally uncovered. Not only that, but I credit Dr. Ho's thoroughness with preserving my sanity.

 

I write this detailed account of my story hoping it might be of help to others. Avascular Necrosis / Osteonecrosis is a rare disease that many doctors simply do not know much about. Worse yet, as my story shows, even qualified specialists may not understand or be aware of the risk of steroids in relation to AVN. This lack of understanding and knowledge sadly results in needless pain and suffering for many patients. In fact, this is the very reason I helped found the non-profit corporation Osteonecrosis Resource Center. The Osteonecrosis Resource Center will use the “Avascular Necrosis Resources” web site to offer free and thorough educational resources to patients. However, we will also make a concerted effort to improve education about the dangers and risks of steroid medications.

 

I will take a take a break now and will continue my personal story later. Though, in the meantime, I welcome other AVN patients to create an ongoing new thread and write their own stories also. Sometimes the very act of sharing is therapeutic. However, your story could also be inspirational and of help to others too. Give it a try and join in with your own new thread. :)