Tricia
As stories go it was fairly simple; when I was 9 I landed funny on the mat of my trampoline one sunny day and my back has hurt ever since. In my teens it got worse and worse until my leg started to give way in college and I walked with a limp shortly after graduating from grad school. I've had more medications, minor surgeries and tests than I can count or care to remember.
In 2005 I was driving home from work and was in a minor car accident. That's when life as I knew it ended. The injured disc in my back tore and compressed the nerves running down my legs. At 25 I was forced to walk with a cane. I couldn't walk half a block, stand for more than 10 minutes at a time and had to stop working because I couldn't sit long enough to be productive. I was in unbearable, constant pain and I felt like life as I knew it was over and was losing hope.
I saw doctors in Texas, Washington DC, and New York and even consulted surgeons in Germany. The consensus was that my best chance at long term relief was artificial disc replacement (ADR). Luckily, I was described as a PERFECT candidate according to the specifications outlined by the FDA. I thought that surviving the pain for over a year, researching the best solution and surgeon was the difficult journey. Little did I know when I was at the weakest point of my life I would be forced by insurance companies to fight the hardest to have a surgery that all my doctors supported and the FDA approved.
When I got the denial letter from United Health Care I fell into despair. I had a surgery date, all my doctors agreed on the treatment, I had seen the end in sight and yet the insurance companies' doctors who knew nothing of my situation had the authority to refuse payment and force me to wait. The appeals process is long and I had already been to the ER once for a morphine shot after the pain was unmanageable, I was unable to work and already eating away at my disability, all my savings had gone to doctors bills, and I was being robbed of my sanity as I was doped-up on painkillers. It felt like the world was against me. Had my boyfriend and parents not stepped in and managed the process, I don't know what would have become of me.
We learned that it was unlikely that UHC would pay for ADR even after a lengthy appeals process. Aetna, who my company offered, usually paid for ADR, but I wasn't eligible to switch plans for 8 months unless I had a qualifying event (marriage, job change, baby, etc.) and we all knew that I couldn't wait. That was when I hit rock bottom. My boyfriend, Jeff, and I considered getting married so that I could have the surgery I desperately needed. We knew we would marry eventually, but when I thought of getting married while leaning on my cane for support I always cried and we just couldn't let the insurance companies take the last piece of dignity I had left.
Eventually my work agreed to allow me to transfer offices (which I had been asked to do before going on disability), which triggered a qualifying event and allowed me to switch to Aetna. I "transferred" offices on May 1, 2006 and was approved for my surgery on May 5 with little fanfare. Finally on May 17 I had ADR surgery at New York City's Lennox Hill Hospital with Dr. Fabien Bitan on the eve of my 26th birthday.
The surgery was a resounding success. Near midnight on my May 18, after much practice and many failed attempts, I rose from my hospital bed and walked down the dimly lit corridor hand in hand with Jeff without a cane or the shooting pain that had plagued me the past several years. It was like walking out of a nightmare. ABC News recorded my surgery and I appeared on World News tonight and danced a little on Good Morning America 6 days post-op.
Jeff and I got engaged this past December and we moved to Chicago so that Jeff could go to graduate school at Northwestern for a Masters in Medical Information Systems. He hopes to improve healthcare through information technology so that the road for others isn't as difficult as it was for us. I sold my car and am now working full time for a marketing firm in downtown Chicago. I walk or take the train everywhere - to work, to the grocery store, to get my hair cut. It is more than I ever dreamed of. When I think about my life today and how lucky I have been, I am overwhelmed. Sometimes Jeff and I will be out doing something normal like shopping at the grocery store, and he'll just stop and say "I can't believe you can do this" and that's how I feel all the time.
It scares me to think about what would have happened to me if I was not able to switch insurance companies and could not obtain coverage for the surgery. It disgusts me that our insurance companies are allowed to deny policy holders treatments and procedures they need. My case has been a perfect example of the disparity in the U.S. Healthcare System. I sympathize with the thousands of other eligible candidates for ADR surgery who are suffering while they wait for their nightmare to end. I pray that they have the strength to fight for the treatments that they need and thought were covered when they paid their policy premiums.
Link to ABC & World News tonight
http://bitanmd.com/new/index.php
Link to ABC News Article
http://abcnews.go.com/WNT/PainManage...ory?id=1991281
Jane
Unlike many patients, I cannot point to the date of an injury. Oh, I’d had a back strain when I was in my early 20s, but after a few days it was all better -- no meds, no therapy, nothing. When I got in my late 30s, I started having real back problems. I had a preschooler & life was very busy. I first noticed having pain when I’d bend over, especially in the morning. Just to brush my teeth, I’d have to lean on the sink for support. But you learn adaptive behaviors to get by. By the time I was in my early 40s, I was having more problems and searched for a neurosurgeon. He ran lots of tests, said my disc was degenerating, and surgery would not help at that time. He said I had the back of someone about 20 years older. This was about 1992; we discussed ADR, but he said it was still experimental & not available in this country. So, with the help of my chiropractor, I put up with it. (My chiropractic care is also NOT covered by my insurance.) I was also placed on various muscle relaxants. I ended up on Celebrex, but I could not take this any longer.
In 2001, I had a series of spinal epidural injections. I had great relief. I continued the Celebrex and did well until 2005. The pain increased, & nothing helped. I saw numerous doctors & had more epidural injections, which did nothing. I was referred to the Pain Clinic and they did more injections, tests, etc. Nothing helped. The pain pills only helped some only some of the time. This spring they did a discogram and confirmed that my disk at L5-S1 was gone. They recommended surgery to relieve the pain. I had already received too many doctors’ opinions, that a fusion would stress my other disks and set me up for further fusions later.
I researched the current state of ADR & found very hopeful information, including a forum that provides both information & patient support. I am now 56 with healthy bones, but in need of a new disk. I am currently scheduled for ADR ProDisc surgery on July 19 at the Texas Back Institute with Dr. Zigler.
My insurance is Tricare. Many doctors here do not accept Tricare as they are slow to pay & pay very little. My situation is the hospital where the surgery will be performed is a Tricare provider, so that should cover my hospital expenses. The doctor does not accept Tricare so I will have to pay him. I am hoping for some Tricare reimbursement, but that is not assured. I have an equity loan on my house that I will use to pay for my out of pocket expenses, including travel.
Cindy
Dear Oprah, this is my story.....
Six years ago, I went on a much anticipated bike ride with my 13 year-old son. It was the first non-rainy June day in Minneapolis in 19 days, and my son and I both had brand new, shiny, bicycles, just itching for the ride. Unfortunately, I took a bad fall. Going downhill, I squeezed my brakes in anticipation, when suddenly my rear brakes failed, causing me to squeeze harder and *** over tea kettle I went! Actually, it was more like my sacrum and back just slammed down on the dirt, bounce, bounce, bounce…leaving me in a twisted mess of chrome when the dirt settled. I immediately knew something was very wrong with my back. I couldn't move, with lots of searing pain. I called to my son to hurry, find somebody, and have them call 911.
I ended up sustaining two compression fractures at my T12 and L1, 25% loss of disc height. However, this diagnosis was not confirmed that day, but five ER trips later, three months of living in agony and endless questions, numerous ER docs shrugging their shoulders, bombarding me with questions about panic attacks, and other dubious pursuits, but no one ordering an MRI or Cat Scan of my spine! When my husband had his eureka moment for me to see a neurologist, answers to my screaming pain finally came tumbling in. After diagnosis, I wore a custom, molded body brace and eventually had two vertebroplasties performed to prevent the discs from further collapse. This gradually gave me some much needed pain relief, however, I continued to suffer in my lower lumbar and sacral area. I endured rounds of physical therapy, therapeutic and diagnostic injections, rhizotomies of the nerves, massage, more physical therapy, orthotics, and the list goes on and on. It's not a new list to other spine sufferers such as myself. It's sadly, a very familiar list to patients…
It's now 6 years later, and I am 54 years old. I have always been a very athletic, trim, zestful person, who enjoyed numerous outdoor activities for fun and fitness. My father used to tell friends and relatives, when I was just a child, "she's going to be a gym teacher when she grows up!" My cartwheels down the front driveway must have really impressed him! Being a certified downhill ski instructor was another activity I always looked forward to! In fact, having been a life long skier since childhood, it was in my late 40's I took the challenge to become certified to teach others a sport I loved. Doubles tennis, and working out (low impact aerobics, for sure) rounded out my schedule. Dance lessons to prepare for our son’s wedding were the icing on the cake!
Through it all, my pain just got worse. I stopped teaching downhill, gave up tennis years ago, only did low impact aerobics, and probably the saddest decision was giving up the dance lessons due to extreme pain.
Around this time, my doctor began to recommend me as a candidate for ADR. He certainly saw fusion as a death sentence to my quality and activity level of life. I concurred. The discogram confirmed 10/10 concordant pain at L3-4, L4-5, and L5-6, my transitional segment. I requested approval for it with my healthcare provider but was immediately turned down.
After following through with their appeals process, my husband and I decided I had one back, one shot, one chance, to really do it right. Hence, we acted on my doctor's recommendation of going to Germany to have the best doctor for multi-level ADR in the world do his magic on me. That is my doctor's summation of his colleague, Dr. Bertagnoli. After my 2nd denial for coverage, we went anyway. I was not going to let my healthcare provider dictate my life and what they thought was best for me.
I am still $68,000.00 in the hole, and am awaiting the final decision by my husband's employer. I have no regrets about having my three level lumbar ADR, and hope to convince my healthcare provider as well.
Thanks for listening.
Marilyn
Dear Oprah,
No one who has suffered under the new workman's compensation laws in California would call it a "success" except the ever-greedy insurance companies. By law, I am limited to what the system will dole out in the way of health care, which is *as little as they can*, often with months or years in between requests and service if the health care comes at all. I have had friends who have had to go to court for a simple CAT scan (would it not be cheaper just to give them medical care, not to mention ethics?).
You might wonder why we don't use private insurance. Some lost it when they lost their jobs due to debilitating back injuries, I personally have used it and have ended up with some very big bills because *by law* when the medical procedure or service is denied by the Workman's Compensation Insurance, we can use our own insurance. Also *by law* they can deny paying because work comp has the responsibility to pay. Patients end up with no health care or very large medical bills! It's a no win situation. Oh, except for the insurance companies who profit from not paying for health care.
The workman's compensation system in California is touted as a "success" by the current administration. The Governor cannot know of the thousands of personal hells he has created for those who were injured at work.
In addition to getting no health care, I got no payments from Workman's Compensation (no surprise, really, although they are certainly due), and none of my Long Term Disability, which I paid for twenty years because of the Federal ERISA laws -- that allow insurance companies to eliminate paying compensation if the person got the insurance policy through their companies at work. Most of us did. Millions are going without disability policies that are needed for survival -- not to mention that we paid for it!
I was injured in 1999 on a flight from New York to San Francisco. I got adequate to good medical care for a year. After that, it has been kept from me by various devious methods that delay or deny treatment. Not to mention other methods that are used to intimidate the patient.
We all have private detectives following and filming us for years (I have the tapes). It is an awful feeling to be so sick and have to be treated like a criminal. I thought I was crazy (no doubt at this point), until I talked to other Workman's Compensation patient friends. The phone calls, with no one there.... The shady doctors that often were abusive, and that wrote up legal reports lying about our true condition. It's all part and of the “business as usual” for the insurance industry. They portray 60% of us as malingerers (I think they are now saying 90%) in order to sell contracts to large companies, who have to have large funds *by law* that are managed to bring in interest and dividends.
Right now, I'm waiting to find out why I have continued pain after a three level ADR that I have paid for out of pocket. I am starting to rack up some big bills again even though I have at least three insurances at all times. I have been denied a visit to an orthopedic surgeon, delayed physical therapy for one year, no outright denial, delayed a CAT scan six months. I have bills for an MRI, two epidurals, and an osteopathic treatment sitting on my desk. Not to mention the ADRs in Germany, which cost with travel and hotels around $40,000. I refinanced my house to do this. I don't know how much longer this house of cards can stand. Now the docs think I have either scar tissue, but have been really focusing on Sacral Joint Dysfunction. I will need extended PT and Osteopathic manipulations, if not another surgery, or may continue to be disabled if the insurance companies have their way. Alternatively, I may lose my house, everything, and hopes to gain my health.
Is this the America that we want to live in? If not, we must ask for change.
Thank You for Reading,
Kindest Regards.
Marilyn
Eight Years in Bed
Idet
3 Level ADR Germany
Continued Pain