Does "Chronic" Mean "No Treatment?"
These are some questions that I'd love to have answered. In August of 1996, I was healthy, strong and able to run three-legged races at my former employer's Summer Outing. Now, I exist in a world of constant, frequently excruciating, pain... unable to walk more than a few feet, and confined to a wheelchair whenever I leave home. I have an MRI-confirmed ruptured disc, physician-confirmed bilateral Sciatica (constant and severe on left side), a grinding noise and sensation in my neck, and some kind of seizures (and I have a history of epilepsy dating back to 1974.) My name is Laura Stephanie Potter. Until July of 1997, I lived in New York City, at which time I moved to Central NJ. I lay the blame for my current crippled state, and a bout of suicidal depression, squarely on the shoulders of, not one, but two, HMO service (non)providers. This is my story. A story similar to that of too many people who have lost their health, their livelihoods, and even their lives because of so-called "Managed Care." A tale of mis-diagnosis, gatekeeping, and bureaucratic delays. It's a fairly long story, yet it only chronicles a little more than one year...September 02, 1996 to today, September 04, 1997 Labor Day 1996, I woke in the morning paralyzed by pain from the waist down. Once I was able to sit up and massage my extremities, the pain eased down somewhat. But it never went away. I was with the Prudential-Plus PPO, so I made an appointment with my primary care physician and tried to go about my life. By the time I could see a doctor who was covering for her, nearly two weeks later, I was in need of a cane for walking any distance. I also had several large, red, bulls-eye rashes on my left arm and on my back. (This would later (much later) prove to be Lyme Disease.) Dr. Yudelman looked at the rash and proceeded to write a prescription for a fungicide. He ran some basic reflex tests, then referred me to a Physical Therapist. The therapy helped a little. Electro-stimulation and hot & cold packs helped make getting around more tolerable , but after a few sessions, I seemed to hit a plateau. No matter what the therapist did, I just didn't get any better. And the fungicide wasn't doing anything for the rash. So I made another appointment with my doctor, this time with her directly. It took another couple of weeks before I saw Dr. Schwartz. Did I expect better? She too prescribed a fungicide, though a different one. She referred me to an Orthopedic Surgeon for evaluation. Again, it took forever to book an appointment. Apparently, Dr. Schwartz had problems getting an authorization. When finally I saw Dr. Brisson at the end of October, I told him I had a constant "dull roar" pain, like a band across my lower back, and sharp, knife-like pains through my left hip and down to my toes. He referred me back to physical therapy. I was beginning to get peeved. About this time, I signed up for a different HMO through open enrollment at my employer. I knew that after January 1, 1997, I'd be seeing different doctors and maybe things would get better. October and November were our big months, so things were hectic at the office. Late hours were the norm, and the holidays were coming up. So, I followed the doctor's orders, dealt with office stresses, and ate handfuls of ibuprofen for the pain. I was never able to go to physical therapy because the HMO-authorized ones were booked up until New Years. I did see Dr. Schwartz once more before January. After I read an article on Lyme Disease and mentioned it to her, she drew some blood to test for it, but the results came back negative. Despite the fact that the blood-test wasn't considered conclusive, she did not pursue it further. Finally, late November 1997, I saw Dr. Brisson again and he referred me for an MRI of my lumbar spine. Since I had required back surgery in 1992 for a ruptured disc, he diagnosed it as "post-laminectomy syndrome," pain caused by the compression of scar tissue. I was told the problem is common and chronic, but he wanted an MRI to determine whether surgery was necessary or not. Since I'd signed with a different HMO, I knew he'd not do the surgery...but I did want an MRI to be done to satisfy my curiosity. Again, the HMO balked initially, but finally authorized the test. The results, though they showed the scar tissue, were inconclusive.
Right off the bat there was a problem with the changeeover from the old HMO to the new one . A major foulup that affected a large number of people in my office who had been covered by Prudential. We were no longer with the old HMO...nor were we quite with the new one. At least, our Human Resources department came up with Emergency coverage for us, but anything routine had to wait until the insurance companies got it together. Well, mid February 1997, I was finally able to get my new primary care physician. And he was located very near work too. Dr. Joy seemed to take me seriously, which was refreshing. But, I was having to start from square one again. Although, like the Prudential doctors, he gave me (still another) fungicide, he told me he suspected Lyme. He didn't like the look of the rash, which had first decreased, then spread. My back pain had gotten more severe and I was suffering from fairly intense fatigue, so he prescribed a strong NSAID. He wanted to see me in a week, but the next available appointment was on Feb. 26. Back again, but this time I was referred to a Dermatologist for the rash, and an Osteopath for the back problem. In early March, I saw the dermatologist. She also teaches, so she took a biopsy of one of the rashes while a couple of students looked on. Dr. Buchness took photographs and drew blood for a Lyme test, and wrote a prescription for an antibiotic, Doxycycline(?). Was I finally getting some quality healthcare? Mid-March I saw Dr. Inwald, the osteopath. Same as the Prudential surgeon, he diagnosed post-laminectomy syndrome. But he noticed a problem with my left hip as well. And, of course, he sent me back to my primary physician for a referal...to a physical therapist. Once more through the hoops. I was able to begin, at a place close to work, the very next day. Again, it began primarily with heat, cold and electro-stimulation. It took until March 25 for me to get the results of the Lyme Test and biopsy. I had tested (mildly?) positive. But it would not be until April 11 before I could see Dr. Buchness again. Before then, on April 8, I saw Dr. Inwald and received an injection of steroid in my hip. He said we wanted to proceed "conservatively", but also warned me the steroids might do no good. When I left, I took along a recommendation for an electro-mylogram/nerve-conductance test. Ouch! I'd had a couple of those back in 1992. They can be very painful, so I sure didn't look forward to it. I wouldn't have to worry too much...the soonest appointment was for May 20th. That Friday, April 11, Dr. Buchness prescribed more of the same antibiotic. She wanted a Lyme re-check done, but since the medical specimen messenger had already come by, I had to return Monday for the drawing of the blood. However, we began discussing stronger treatment via intravenous infusion. I had an appointment with Dr. Joy coming up, so she was going to relay the results to him. The fatigue was getting serious. I could barely walk a hundred feet without sitting down for several minutes to rebuild my strength. I had to stop riding the subways to work. I could rarely get a seat, and even when I did the jerking starts and stops were excruciatingly painful. While I could afford it, I took the Staten Island Fast-Ferry because they had shuttle busses that stopped near my office. Also, the boats had softly padded seats, unlike the wooden bench seats of the traditional SI Ferry. Fortunately, the grocery store in Staten Island that I shopped at had electric scooters that customers could use while shopping. I had deteriorated that far. Dr. Joy wanted to check my blood levels, so when I saw him more blood was drawn. I was beginning to feel like vampire-bait. That was on April 28. May 12th, the results were finally back. The next day was my next appointment with Dr. Buchness. It was quick. She decided I needed the IV treatment and referred me back to my primary physician (Dr. Joy) to set it up. She also took me off of the antibiotics she'd previously prescribed. I mentioned my next appointment with him was two weeks away. She explained that Lyme Disease is a chronic disease, so a couple of weeks wouldn't matter. Huh? The next week was the EMG with Dr. Mendelsohn As I expected, it was rather uncomfortable. However, the preliminary reading showed some form of damage to my left leg. The end of the following week proved to be very busy. On May 27, Dr. Inwald looked over the EMG results and recommended a referral to a neurologist. He also performed a bit of hip realignment to try to ease the hip pain. I can't really say that it helped much. May 28 I saw Dr. Joy again, and we spent a couple of hours trying to get the IV treatment approved. Despite Dr. Joy being my primary care physician, the person on the USHealthcare end of the phone was giving him a runaround. Finally we were able to get it approved and set up to start the next day. Friday evening was when the home health nurse arrived to put a heparin lock in my arm. She went over the proper way to self-infuse the antibiotic, Cephlasporin. She was there about three hours, making sure I wouldn't have a reaction, and drilling me on the warning signs I should watch for. Come Monday, on June 02, another nurse visited to insert a catheter into my arm. I did some ambulance work when I was younger, so needles don't bother me. But watching that catheter snake into my arm was possibly the scariest thing I've ever experienced. It was only 7.5 inches (she said the average was 20--into one's heart). While it didn't hurt, the experience was terrifying. Thankfully, it was over quickly. The next day, Dr. Joy and I discussed my health, and he put me on a three-month disability. Several days later I applied for disability insurance. Feeling sick had become so frequent, that I didn't recognize a couple of the warning signs. Over the course of the two week treatment, I got progressively more ill and began to itch constantly. When the nurse came Monday June 09 to change the dressing, she was concerned enough to report it to her agency, which tried to contact Dr. Joy. It wasn't until Thursday that he contacted me and suggested an antihistamine to counteract my sensitivity to the drug. But since the course of treatment was nearing its end, he kept me on the antibiotic. On the 14th, the nurse removed the catheter.
June 19th, 1997- I awoke again paralyzed below the waist. This time it required EMTs and a trip to the local emergency room. I was in excruciating pain except for my left leg...I couldn't feel that at all. Once they toned down the pain, I was released with a prescription for Vicodin,and an urgent referral (that, of course, had to go through my primary physician) to a neurosurgeon. I left on crutches, with no feeling in my leg. The next day, I saw the neurosurgeon. Somehow, his office was able to get me scheduled for an MRI immediately. I wouldn't see Dr. Chang again until July the eighth when the MRI report would be ready. Previously, my depression to optimism ratio had been reasonable. But, the constant pain and frustration with the system was overwhelming me. I realized suicide had become a serious consideration. Through my company's employee assistance program, I connected with a local CSW. The EAP caseworker spoke with me by phone a couple of times prior to my first appointment with the therapist...she was worried that I might stop resisting the urge. I didn't then. The next couple weeks saw a close relationship end harshly, but therapy and a quick referral to pain management kept my spirits up...barely. Dr. Chang had gotten the MRI reports which showed a small re-rupture of the same disc I'd had surgery on 5 years before. He was reluctant to consider performing surgery, but said that if pain management didn't work, he'd take it under advisement. I thought I might finally get some relief!! However, he warned me that I likely would not get full use of my leg back, though he would try. Those hopes were dashed a few days later. After his evaluation, Dr. Song, the pain managment specialist, refused to treat me because of the paralysis in my leg. This time I was referred to a neurologist, instead of the neurosurgeon. Although I made the appointment, circumstances would soon find me in New Jersey and unable to keep it. Twice that weekend I attempted suicide, failing both times. I called a friend, who promptly came over to get me. She realized what shape I was in, so she took me to some mutual friends who had crisis intervention training. They watched me fall apart, then did their best to put me back together. The weekend was spent under their oversight and protection, then my friend moved me out of my old apartment and into hers. A decade-long relationship had gone sour, but at least my cat and I had a new home.
First I tried to get my USHealthcare coverage transfered to New Jersey. They didn't want to do it. Then my employer's benefits specialist thought she had it straightened out, but everytime I tried to access it, they said I was still only covered in New York. This was despite working through it with the company's account representative at the HMO. (Do their computer systems ever talk to one another?) Since I didn't have a NJ plan directory, I asked for a few fairly local physicians who could become my primary care physician. Every single one I called over the course of three weeks was: 1) a specialist who could not, by USHealthcare rules, be a primary; 2) no longer accepting USHealthcare patients or; 3) had retired. Now, isn't this getting just a little thick?I had gotten to feeling somewhat better, so in an attempt to get a little exercise and stave off stir-craziness, I tried a little walking around the local neighborhood on my crutches. Mostly I did window-shopping and sitting on bus benches to rest up. I didn't think that would be the last time I would walk more than a dozen feet or so. Fortunately, a friend was able to get a wheelchair on loan, since I was unable to get one through the insurance company. Friday, the first day of August again found me in the local emergency room; in severe pain, having another breakdown, and suffering some kind of shaking fits. (These fits have not gone away, occuring to one level or another almost every day now.) My pain medication had run out, and despite calls to my previous physicians for help, could not get more prescribed. This time, the emergency room's treatment was a pain injection, another prescription for Vicodin, and an ER referral to a psychiatric intensive outpatient program. I started the following Monday. My caseworker said he'd had a hard time getting authorization, but ultimately succeeded. The insurance company capped it at about 20 days. During my treatment there, it was necessary to get the psychiatrist to prescribe pain medications, since I still had no primary physician. And without one, I could not get to a neurologist to continue where the New York doctors had to leave off. Nor could I get the necessary disability re-evaluation in time to continue getting payments from the disability insurance company. After only three small checks, they discontinued payments. My caseworker went out of his way to get me connected with a USHealthcare-affiliated doctor. I saw him and got the referral for the neurologist, Dr. Roger Behar, though the first available appointment would be September 2nd...the very day my three-month disability certification would end. So, this past Tuesday, I kept that appointment. I am suspicious however. The ONLY form I had to fill out was an insurance claim. No medical history...nor did he give me a chance to mention any prior surgeries, history of epilepsy, or other possibly pertinent information. I have NEVER been to a new doctor and NOT had to complete some kind of history form. I did provide him with records from prior physicians, but the only thing he particularly looked at was lumbar-sacral MRI films. Dr. Behar confirmed the current ruptured disc, but claims it can't be causing my problems.He recommended that a Cervical-Thoracic MRI be done. Friday, I still don't have the authorization/referral. But, I'm not supposed to see him again UNLESS something shows up on the films. Pardon Me??? Forgive me for being cynical. But, since my referral allows 2 followup visits, I would expect one more appointment; for any tips, suggestions or medical information the doctor could provide that might help me. Nor would he write the necessary statement to renew my disability; instead claiming the primary care physician was responsible. And the PCP's office claims the Neurologist is supposed to be responsible. Why don't I feel confident about this??
Doesn't this sound like Theatre of the Absurd? |
