From Oakland to Maui - 36 Years of Kaiser Runaround

I guess I’m just one more Kaiser victim. With, at least at this point, absolutely no recourse and virtually no help with my ongoing health problems.

In 1968, at the age of 12, I was diagnosed with scoliosis spinal curvature during an annual physical at Kaiser Permanente in Walnut Creek, CA. I was referred to a spine specialist in Oakland, CA, Dr. Ronald Blackman. I was x-rayed and examined and surgery was recommended to straighten the curvature. On November 5, 1968, a surgery was performed-laminectomy, fusion of vertebrae T-5 through L-3and Harrington rods were inserted left and right sides of my spine and jacked into position straightening the spine. I spent 2 weeks in the hospital. The first week I was on a Stryker frame, flipped and rotated every few hours by untrained nurses. It was an excruciatingly painful ordeal every time. I was nauseous and throwing up that first week. I was then put in a cast that went from under my head and jaw to just above my pelvis. Because I had lost weight, the cast was too tight for my stomach to expand when I ate and a square section later had to be cut out to allow some expansion. Where the cast met my jaw, there wasn’t room for my jaw to open much when I ate which caused a large sore to form. That left a permanent scar.

For 6 months I lay flat in bed. My mother flipped me over every few hours, nursed me, handled bed pans, etc. Once a week, with my brother’s help, she carried me to the kitchen counter and washed my hair in the sink. After those 6 months, I was taken back to the Oakland hospital where I was slowly moved upright and learned to walk again with a walker. Dr. Blackman had told me the cast would be changed at that time, but he decided to leave it on as it was holding my spine so well. I don’t recall how much longer I had to wear it, months more, and it was pretty nasty by that time. I had to return to junior high school wearing that thing and had my first experiences feeling like an outcast and oddity.

When the cast was finally removed, I was considered a successful patient and Dr. Blackman paraded me in front of other doctors. Wearing only a swimsuit, it was humiliating and embarrassing for a pre-teen.

I returned to Kaiser Oakland and Dr. Blackman for x-rays for 3 or 4 years. Swimming was the only recommended therapy at the time, which I did as soon as the cast was removed. I was never told of possible long-term effects, nor was any follow up done later as I aged.

Through my teens, twenties, and thirties, I was healthy and physically active. I swam, hiked, did yoga, and worked hard, often pushing my body more than was good for the spine, knowing that at some point the wear on my lower vertebrae would catch up with me, but wanting to be normal physically.

In 1992/3 I started having episodes of lower back pain. I was living on Maui and had Kaiser insurance so went to their Wailuku clinic. I was treated quite badly. First by their orthopedist, Dr. Probst, who’s first reaction on seeing my x-rays was to say "Kaiser didn’t do this surgery!" I immediately wondered what he wanted to hide and began a 10 year search for answers. Over the next several years, I was x-rayed, sent to Honolulu for a test for pseudoarthrosis with a radioactive tracer but was not told what pseudoarthrosis was, given no diagnosis or recommended treatment. Told by Dr. Probst that I had a low pain threshhold. Made to wait 3 hours for pain meds while Dr.Benke left needles on his waiting room desk to see if I was a druggie, and generally treated as though I was inventing my condition in order to get drugs. And never taken seriously.

In 2001 I was a passenger in an automobile accident. I sustained a whip-lash type injury to my lower back and was taken by ambulance to Hilo Medical Center. My whole left side was in spasms, and even though I explained my spine condition to the attending physician, Dr. Thomas, he only ordered neck x-rays. I was given Ativan and released. I knew as soon as the medication wore off that something was seriously wrong with my lumbar spine area. At my own expense, I flew to Honolulu to see a spine specialist who I’d seen years earlier through Kaiser. Dr. Kaan was dismissive, hardly looked at my x-rays, and recommended physical therapy. I then saw Dr. Smigel, an orthopedist in Hilo, who referred me to Island Physical Therapy, then wrote a report to the insurance company stating that 80% of my injury was from my previous spine condition and 20% to the auto accident. The insurance company then proceeded to bill me for 80% of the accident related bills, at which point I stopped the physical therapy as I could not pay those bills.

And still can’t.

Now, in 2004, I’m 48 and live with lower back, neck, jaw, and shoulder pain 24 hours a day. The State of Hawaii has denied me disability 4 times. I have no health insurance, no prescription drug coverage and am expected to work like a normal healthy person. I live with so much pain that I really don’t know how I keep functioning each day. And now I don’t even have enough money or strength to buy food. I know now how it feels to be marginalized and abandoned. To keep fighting for the right to decent human care for persons with disabilities when it would be so much easier to just give up. But this is my life dharma and I will keep digging for the truth behind what I now believe was an experimental surgery in which I was one of hundreds of guinea pigs used by the Nazi Kaiser doctors.

Just how big are the secrets that Kaiser keeps?

Jan C. - 4/11/04