My name is Alexandra Albin (msaxolotl on Twitter) and I have an orthopedic condition called osteonecrosis or avascular necrosis (AVN). AVN is a painful and debilitating bone disease that typically affects long bones, is caused by a loss of blood supply to the bone, and can lead to bone degeneration and the collapse of joint surfaces.
AVN can happen for many reasons. In my case it was the result of medications — steroids —given for a misdiagnosed condition of Multiple Sclerosis (MS) in 1994. That was my third strange neurological episode over several years of what was suspected to be MS, but never confirmed. One spinal tap was positive with white blood cells, but not enough to be clinically significant. Each episode took several months for me to recover.
The 1994 episode was my worst symptomatically: I had a paralyzed bladder for a few a months. It was awful. I only knew I had to urinate when my bladder was over 800 cc, which is quite abnormal for woman. (We normally experience a full bladder between 300 and 500 cc.) I had to learn to self-catheterize. Although my MRIs were clear, two evoked potential tests (which show how nerves conduct along their pathways) were abnormal.
As time went on during this episode things got worse: I started having problems with my left leg, I would stumble and fall over, and I started dropping things with my left hand. My doctor neurologist at UCLA went back through my history and saw the series of strange events over the years. Although the gold standard of an MS diagnosis is the MRI, he based his MS diagnosis on clinical evaluation and my old abnormal spinal tap.
Despite his best efforts things continued to deteriorate, and mega doses of steroids were used: ten days of high dose intravenous infusions of methylprednisolone (Solu-Medrol) were followed by a tapering dose over about a month. During the taper I had horrible pain and swelling in my knees, and at one point I had to be held down. The doctors said they had never seen anything like it. That was not the first nor the last time I have heard that. It was one of the hardest periods of my life. I was in a wheelchair, gained over 20 pounds, and was not very functional. I injected beta interferon for several years, to the tune of $1500 per month. (Thank you, Dad.)
It took a year, but I did recover. I was 31 at the time and I thought the worst was behind me.
The Diagnosis of Osteonecrosis
In 1997 I started having pain in my legs, and thought that it might be MS related. I went around to different neurologists to figure out what was going on. I ultimately saw an orthopedic surgeon and a neurologist the same day at the University of California at San Francisco. The orthopedist said, “Well, you have this condition in both hips, called osteonecrosis, where the bone dies.”
The neurologist said, “Well you don’t have MS, but now you really have something.” When osteonecrosis became my medical issue of the moment, little did I know it would last for ever. Since both hips had this condition, the verdict was that the steroids caused it. At that time, we did not know that the knees were also affected.
That started a very long, convoluted process that has led me to now. I have had over 22 orthopedic surgeries on hips, knees, shoulder, elbow, wrist, and fingers to save my joints. All the lower limb joint issues have been directly related to the bone disease. The cause of the upper limb joint issues is less clear. Some may be overuse due to being on crutches for so long, but no one knows. Some joints have been worked on several times, others only once. Most have been bone preserving. The hardest episodes have been a failed hip replacement at Stanford by the chief of orthopedics and the complicated revision I had last year at Rush in Chicago, by the father of the hip revision scale. Out of the thousands he has dealt with, he says he has only seen three cases close to mine. When I ask him “What gives?” he shrugs and says “Alex, you have weird bone.”
Although I live in California, most of my surgeries have been by my medical team in Colorado. I came across this group by chance in 2000 when a local doctor had the guts to tell me (when I learned that I had AVN in my knees too), that I should not see him or any other local physician, but should see Dr. Steadman in Vail, Colorado. Since then, they have become my refuge. Some people have their Mecca. I have the Steadman Clinic.
Other surgeries have been done in California and recently Chicago. I have gone to the East Coast, and up and down the West Coast to find orthopedists who could deal with my issue in a way I could trust. One specialist I saw in Baltimore (considered an authority on AVN) was more concerned that I had not been referred to him by Doctor Steadman (“doesn’t he know who I am?”), and that I had a pre-publication version of his article. He recommended two surgeries, back-to-back and just days apart, on both my knees. So much for Baltimore. (I don’t care how talented you are.)
I have had a host of different types of surgeries. The first was bilateral hip surgery with no weight bearing for 3 months. That was awful, and dumb in hindsight. Ah, youth! I have had wildly experimental surgeries. In 2001 I had what is called “Free Vascularized Fibular Graft,” where they harvested my fibula and implanted it as a strut to hold up the hip head while providing a new blood supply. That was a difficult twelve month recovery. Other experimental surgeries included one where they implanted an OBI biomatrix plug (bioabsorbable bone graft substitute) to repair a large lesion in my femoral head, along with a series of microfractures. This procedure is similar to amazing work they are now doing in rat models for growing bone parts using stem cells, but it did not work so well in me. (Nearly two years on/off crutches = grouchy!).
I have had a lot of microfractures, spent lots of time in a continuous passive motion (CPM) machine, tried Human Growth Hormone (HGH), drank worm juice tea (a Chinese herbal recipe), tried acupuncture, used ultrasound to help stimulate bone growth, had several Platelet Rich Plasma (RP) injections (a lesser form of stem cells full of growth factors), tried combined bone marrow + PRP injections, and recently used amniotic stem cells to help with scar tissue around my leg and groin. I also had conventional procedures like a total hip replacement by an orthopedist at Stanford whose specialty is failed hip replacements. It didn’t go so well, and resulted in a messy revision, from which I am still recovering. The original hip implant never grew into my bone, resulting in a condition called “end of stem pain”.
I Am the CEO of My Own Body
The rest of my life will be dedicated to managing my condition. I likely will need more surgeries. Luckily I have always been athletic, and stay as strong and fit as I can.
Besides my orthopedic condition I have other conditions that don’t follow any conventional pattern. As a result I have become a full-time patient. It is my job and career now that my “working life” life is over. I finally went on long term disability in 2007, following a business trip to India on crutches, during which I had a problem with a blood clot.
I often use the phrase ‘I am the CEO of my body.’ I have learned the ropes of being my own advocate the hard way, and have developed enough confidence to make difficult decisions about a condition that is not well understood. I have had to scratch, fight, and claw for my rights as a patient dealing with the medical and disability insurance quagmires.
I have also had amazing human caring moments with caregivers throughout the medical community and made friends in the process. I have learned more about bureaucratic issues related to a chronic illness than I would like, including things like CPT and ICD10 codes, dealing with those marvelous EOBs, how to get your medical records, how to correct coding issues, knowing what your insurance will approve and deny, and how to appeal a denied procedure like a $33K Femoral Acetabulum Impingement (FAI) surgery that was denied by my medical insurance company.
I have been nearly buried by my disability insurance company which tried to deny me coverage and even placed surveillance cameras on my house and me. I have had to deal with the ego of doctors who think they reign supreme and who don’t like someone who asks questions, who have no idea what pain is like, or who misdiagnose you but will not take responsibility. I have learned that you can have good outcomes with mediocre doctors, and bad outcomes with top doctors.
I have come to fully appreciate the fact that medicine is a hybrid of science, art, and human nature (the good and the bad). I have also learned that feeling safe with a doctor or clinic (whether or not they have all the answers) counts in spades, and to run when you don’t really trust what you are being told or who is telling you. I certainly wouldn’t have chosen this path. It has been tough and awful at times, yet it has raised my consciousness about human suffering and made me a far more compassionate person, so I focus on that positive.
