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Insurance Hell Discuss True Stories from Patients: Insurance Nightmares Abound in the General Discussion forums; During the past three years, we’ve heard from people from all over the country describe their medical insurance nightmares. Though ...

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Old 06-14-2007, 08:04 AM
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During the past three years, we’ve heard from people from all over the country describe their medical insurance nightmares. Though the U.S. was once thought to have some of the best medical care on the planet, the cracks in the insurance system are deepening…and patients are falling through the chasms!

Patients spend countless hours pursuing an accurate diagnosis of their debilitating spine problem. Eventually, some will opt for artificial disc replacement, and most will suffer with the insurance company denying coverage -- though artificial disc replacement was approved for both the Charite’ and Prodisc.

In mid June of 2007, patients rallied around this cause to help the public appreciate the complexity and gravity of the insurance issues. These patients in this community focused their attentions on the Oprah show, which invited feedback from an earlier episode that featured an interview with Michael Moore, whose movie Sicko will soon be shown nationally.

However, going forward, we will continue to build on this story. Patients, please continue to email or PM me your story, and I will edit/add it to our evolving appeal for change. Also, please realize that your story is very important, and this topic will frequently be sent to journalists, elected officials, policy-makers and the media.

Thanks for sharing your story. Change starts with you and me!
________________________________________________

Robby

Dear Oprah, here is my story.

Starting in early 2004, at age 35, I began to have severe lower back pain. I had muscular back pain for years after my children were born but this pain was different. I visited a spine surgeon in my area. MRI’s determined I had a herniated disc. The doctor prescribed physical therapy for about 4 months. The physical therapy helped but as soon as I returned to normal activities, the pain came right back.

In August 2004, I had my first spinal surgery; it was a microdiscectomy for the herniated disc for L4-L5. The surgery went well and I felt little to no pain for 20 months.

In August 2006, I had my second spinal surgery with the same surgeon, which was also a microdiscectomy for the same disc. New MRI’s determined that degenerative disc disease (DDD) was evident and that this second surgery may only buy me some time before a more permanent solution was performed. The surgery went well again and I felt little to no pain but for only 4 months this time.

In February 2007 I began to feel pain again in the lower back area. I did switch doctors and found one that was very familiar with ADR surgery. The new MRI’s determined DDD was very evident at L3-L4 and L4-L5. Further tests, such as invasive and non-invasive discograms, bone density screening, and CT scans were performed. It was determined that ADR surgery for both levels would be the best solution.

After researching lumbar surgery options and speaking with my doctor, Dr. Daniel Laich of the Illinois Neuro Spine Center, I am convinced artificial disc replacement is right for me. I understand the risks and potential benefits to both fusion and ADR. My doctor and I are concerned that a fusion will wear out the levels above and below the fusion with my active lifestyle. Once a fusion is performed, I really have no other options, with ADR, I still have have the fusion option, if needed, when I am much older.

I have just been turned down for ADR surgery because Anthem Blue Cross Blue Shield says the surgery is 'experimental and not medically necessary.' I am currently in the midst of the appeals process and hoping for a positive outcome. I have been with Anthem Insurance for the last 17 years. The sad thing is, my husband has Aetna insurance, and Aetna generally pays for this surgery. But I am not on his plan and cannot get on it until his open enrollment period, January, 2008. Had I known that Anthem BCBS would not have paid for this, I would have switched to his insurance long ago.

It is hard for me to believe that two major health insurance companies have such different stances on the same surgery.

I currently cannot sit or stand for any length of time, nor can I run or work out. In addition to the constant back pain, I also have pain, discomfort, numbness, and now daily leg cramps in my left leg preventing me to walk normal or use my left leg to hold my weight. My quality of life has become sub-standard, especially at age 38.

I am a very fit, and otherwise healthy, athletic 38 year old female. I enjoy working out, running, bicycling, and staying active. I would like to maintain this healthy lifestyle for the rest of my life. My doctor and I feel as though I am a perfect candidate for artificial disc replacement.

A surgery date has been set, however, if Anthem BCBS does not pay for the ADR surgery, I will not be able to afford it out of my pocket. I refuse to have a fusion when I know the best option is to have ADR surgery.

We will see what happens.

DeAnna

Blue Cross/Blue Shield Preferred PPO approved me in March 2007 for anterior Charite disc replacement @ L5-S1 based on proven medical necessity. I scheduled the surgery in OKC for April 19th, 2007 with Dr Stewart Smith. I had a sinus infection and surgery was rescheduled for May 3, 2007. The sinus infection progressed to pneumonia and another re-scheduling for May 31, 2007.

I received a call from Dr. Smith’s office on May 15th (2 wks-2 days before S-date). They stated that there has been a "reduction in the surgeons reimbursement fee from $11,000. to $1,500.-$1,700." I asked what that meant and what it had to do with me?? Peggy stated that many of the major insurance carriers have examined a determination of Medicare, which decided that the surgeon's (one neurosurgeon & one general surgeon for procedure) allowable fees are $1,500 to $1,700 for BOTH of their time in the operating room (approx 2 hour surgery). Insurance Companies have concluded that since Medicare decided that amount than they are only going to pay that much also. My surgery has been cancelled until further notice. I’m not elderly or on Medicare but am being categorized by Medicare standards, I am a private paying person. I called Depuy/Charite Advocacy Group. They knew me well because they had been ready to file appeal and fight BC/BS if they did not approve my disc surgery right from the start. Charite did not have any idea what I was talking about on the reduction of fees and got in touch with Dr Smith’s office to get any documentation from them to help. I called BC/BS in New York and they indicated that they not know of any problem with the reimbursement or approval. They said that it must be at the local level in Oklahoma (in-network PPO issue where all the bills for the surgery are submitted).

I followed up with Dr. Smith on May 22, 2007 and he is horrified/disgusted with the insurance companies! He explained to me that he could not work for that amount of pay, which is allotted as $1,500.00 to him (a neurosurgeon) and $200 to the vascular surgeon. Dr. Smith stated that NO vascular surgeon he knew or he himself would work for $1,700.00 total fees considering the training, skill and liability involved in the procedure. I completely understand!! This has been a long painful journey and I am SO mad at the insurance company that I pay $600. a month premium (which is on COBRA coverage and will expire at the end of 2007).

I have been forced to ask Dr. Smith what are some other surgery options available? I am suffering increasing pain even through the pain medications and intend to call Dr Smith June 15, 2007 and say “Find me something the insurance co will pay for. I can't wait anymore. I NEED my life back.”

I am a 36 year old female, 5' 6", 107 pounds and very small framed.
· 7/2006 MRI of lumbar
· 8/2006- Physical therapy, cortisone injections, lots of pain
· 12/15/2006 Discogram of lumbar
· 4/19/2007 Scheduled for Charite disc @ L5-S1
· 5/15/2007 Surgery cancelled for reduction of fee reimbursement

Abbe

Dear Oprah:

For me my back problems started when I had a water skiing accident in 1986. The tip of my ski caught the water and before I knew it I was ***-over-teakettle. I did not release the ski rope from my hands and knew right away that something had gone “pop” in my back. I was very athletic and figured I would heal in a week or two with rest. That was far from the case. I finally went to an orthopedic doctor and had X-rays taken and there were abnormalities.

At that time, MRI’s were a new technology and were not being covered by insurance companies. They were considered “experimental and investigational”. I would have to shell out the money to have one of these studies done. But the claim was that they could see the soft tissue and be able to determine my ailment more accurately than any other technology at the time. So, I opted to have the test done. Sure enough, the MRI showed a ruptured disc at L4 L5. I was young and scared of having back surgery. At least two doctors wanted to do spinal fusion, I was only 26 years old and knew I did not want my back fused. I put off surgery for six years until I could wait no longer and was on the floor in excruciating pain and tired of living on narcotic painkillers. I found a neurosurgeon who said he would try removing part of the disk using MIS to see if that would make the disc bulge retreat. He told me up front that this was not a promising surgery but it was the least invasive. I gave it a go yet I did not have the relief I had hoped for. My second option was to have a hemilaminectomy along with more of the disc being removed and no fusion. He said this would leave my options open later down the line. I had a great success with this surgery and was happy not to have had the fusion surgery that the other two doctors had recommended.

Almost twenty years after those first surgeries, I have also been diagnosed with the vertebra above and below with degenerative disc disease and ruptures and tears in the discs along with the original disc that I had problems with being all but gone and now I am bone on bone there. In 2004, I was considered a good candidate for the Prodisc trials but I would still have to pay for the artificial discs and they would run $10,000 each. I have had my ups and downs and have even went through steroid type of injections into my spine to alleviate the swelling and discomfort due to enflamed areas pressing on my spinal canal. I have also been put on a medication called neurontin, which helps the nerve pain but does not make it go away. In addition I also take an anti spasm medication to keep my back from going into spasms. Blue Cross of California has denied me three times this year for artificial disc replacement stating that it is “Investigational”. They dropped the term “Experimental” after the second denial when I wrote to them and I included the FDA approval of Prodisc, which was approved last year. Blue Cross of California said they would approve a three level fusion surgery which is a major surgery and would take a year or so to heal from not to mention the loss of any lower back flexibility.

I have done quite a bit of research on fusion and disc replacement and have read many research papers and articles. I now have nerve damage affecting my legs and the last three doctors I have been to have all suggested I have disc replacement over fusion yet I am at the mercy of the insurance company.

Although I am not a doctor, I am in charge of my body and not the insurance companies. If I were a person of unlimited means, there would not be a problem with getting this surgery done. But since I am a middle class American, I cannot get this procedure done without jeopardizing the financial well being of my family. If I were a federal employee Blue Cross would have to cover this procedure since it is FDA approved.

Nanci

I am a 48-year-old woman. I began working for an insurance company at the age of 18 and worked an aggregate total of 20 years for one company. I injured my back at work in March 1996 and was subsequently diagnosed with annular tears in my Lumbar discs at the L4-5 and L5-S1 levels. I was and still am covered for my back injury through workers compensation insurance. I underwent “IDET” in March 2000 which worked temporarily, however the pain soon returned. I was unable to return to work after this procedure and have been treated for chronic pain since that time. I was offered a “fusion” surgery, but I turned it down due to my prior experience of working in the Workers Compensation system and seeing that most fusion patients did not have pain relief. I knew that a fusion was helpful if you had instability in your spine, which I did not have.

Now a new procedure has come along, call ADR or Artificial Disc Replacement, which replaces the disc and maintains spinal motion as opposed to the fusion which limits motion and puts additional strain on the adjacent disk levels. I was intrigued when I heard about ADR and started to research it. I was astonished to find out it had been pioneered in Germany and was not even approved in the United States! One medical device company did finally get FDA approval for their artificial disc (one level replacement only), but my research showed that many patients were turned down by their insurance companies and that workers’ compensation patients were rarely if ever approved. Then, Medicare stopped covering it as well, which put me out of the running completely.

Doctors in Germany have reviewed my case and I am a candidate for a 2-level artificial disk; but of course, I would have to pay for it myself. This will cost me upwards of $50,000 out of my own pocket when all is said and done. These doctors have performed over 2000 of these surgeries as opposed to our doctor’s in the US who have done a few hundred if they’re lucky. Unfortunately, our doctors are held hostage by the FDA and the insurance companies and are unable to increase their use of this technology. If I could have ADR, I might be able to return to work and be a productive member of the workforce again.

Michelle T

I am a 28 year old mom, and I feel I owe the life I have now to my surgeon, and a little piece of technology called a Lumbar ProDisc. 9 years ago, I was a Nurse’s Aide, and had to awkwardly lift a patient in an emergency situation. This ruptured the disc at L4-5. I was 19. The doctors all shook their heads and told me I was too young for this, that it was a 50 year-old, overweight man’s problem, not an athletic 19 year olds. Regardless, I was in constant pain. A laminectomy later that year reduced my pain to tolerable levels, but never took it away. The disc re-herniated two years later for no apparent reason, and the surgery was repeated. It helped again, but less so. I spent the next 5 years going to doctors, therapists, getting injections, and barely dragging myself out of bed each morning, looking forward to 18 hours of hell. I worked, barely, but full of medications. I looked forward to drugging myself to sleep each night because I knew that was the only relief I’d get. I was horrible to my family, yelled at my son, and felt as if I were simply enduring life, not living it.

I had seen 13 doctors, 9 physical therapists, 8 epidural injections, 6 MRI’s, and 2 chiropractors. I owe a lot to my general practice physician, who had been the only one to tell me the pain wasn’t all in my head, because he thought of me during a conference on Artificial Discs. Afterwards he approached the presenting surgeon and told him about me. The surgeon assured him he could help me, and told him to refer me to him. Unfortunately, as I was hurt at work, this was easier said than done. It was over a year later before I was finally able to see him. He said that the pain I was experiencing was because the amount of disc that had been removed in the two previous surgeries had allowed the remaining disc to degenerate to the point that I had less than 1/5 of what cushioning I should have. Every time I stood up, the disc collapsed, putting pressure on the surrounding tissues and nerves, causing extreme pain. This showed up as an essentially ’negative’ MRI, with only a mention of decreased disc space. In the past, my only option would have been fusion. NO ONE recommended this option to me due to my age, and the likelihood of future problems. I had too many decades left in my life to have a fusion every 10 years, and still have a mobile spine at 70. But, as my surgeon said, “It’s now how old you are, the question is what is this doing to your life?” I almost cried when he said he thought he could help me. He gave me an 85% chance that he could ‘significantly reduce’ my pain. I found that a lot better than the 50/50 odds I was given on the ill-advised fusion. I respected the fact that he never claimed he could take away my pain, but reduce it, which seemed a lot more realistic.

It took a lawyer, and 6 months, but I have to feel I was one of the lucky ones to get my disc approved, even while it was still in clinical trials. Today, I am not pain free. But I am off the morphine it took to get me out of bed each day. I am off the nerve pain meds that made me forget where the store was. I no longer need antidepressants to face the day. I was thrilled the day I realized I could pick up a gallon of milk without exponentially increasing my pain. I can now physically help my recently disabled husband. I do Pilates, I can play with my son, and most of all, my back pain is no longer the biggest thing on my mind 24/7, taking over my life. If given the choices I was given over again, I would probably have to repeat this journey. There were no better options at the time of my surgeries. Had this disc been offered to me 8 years ago, instead of 8 months, I think my life wouldn’t have stalled like it did. It shouldn’t take a lawyer, and years, to get treatment that everyone treating you recommends. Is it more expensive and a less proven technology? Maybe. But how much less are the insurance companies going to pay by doing this now, and saving me the future of therapies, many medications, and almost guaranteed future surgeries? And what about the problems that fusions are proven to have? I was one of the lucky ones. I had my surgery paid for, and now I have my life back.

Ronald

Dear Oprah,

Today, I write to you about a tragic story that has been unfolding within my family throughout the course of my marriage. For years I have suffered from debilitating back pain. The only treatment offered to me for many years consisted solely of painkillers. For most of my life, my problem went mistreated and undiagnosed. This has left me with a horrible choice to make. I have been forced to either experience excruciating pain or drug myself with painkillers which sometimes don’t work. Both options forced me to miss out on many experiences with my daughter and wife. I’ve done the best that could be imagined given the circumstances, but there's only so much anyone can do when in horrific back pain.
In recent years, a glimmer of hope appeared in our lives. My back problem was diagnosed as degenerative disc disorder located primarily in the L5-S1 disc. It was a relief to finally put a name to what had hung over our lives for such a long period. My family also found out of a possible treatment for my disease. We thought that a new surgery which was approved by the FDA may finally grant me some newfound comfort. The surgery consists of inserting the Charite artificial disc into my back in place of the degenerative disc. I found doctors willing to perform the surgery of which they said I was a perfect candidate and things began to look up. However, things soon took a tragic turn when my insurance company was contacted. I was insured by ConnectiCare and had not expected any problems to occur but they claimed that the surgery was experimental. I being an experienced union official with the American Postal Workers Union quickly reminded the insurance company that they were legally mandated by the Office of Personnel Management to afford me the surgery since I was a federal worker. This came to deaf ears. I am the first federal worker to challenge the insurance companies on this issue.

I then approached Congressman Olver’s office that was not in my district but they were sickened by the lack of response from the insurance company. They faxed my records to Senator Kennedy, Senator Kerry and Congressman Neal’s Office who is in my district. I thought that would be the catalyst to overcome the hurdles that I endured. That was almost 15 months ago and nothing has happened other than having my family watch as I wake up screaming from back and leg pain and staying up all night crying. You know Oprah, my daughter has watched me go through this most of her life and I still tried to make a living for our family.

Their reason for denying my case now is that in my appeal I didn’t have a plan doctor who stated that the procedure was medically necessary. Oprah, had they opened my appeal they would have found not one but three plan physicians who stated that it was medically necessary.
In my daughter’s four years of high school, there was a father and daughter dance that I could not attend. I told her that no matter what in her last year I would have the dance with her that I dreamed about as a Dad. That week came and I could hardly walk so suffice to say, she was heartbroken and so was I, not because of me but my pain.

It seems like no one is really trying to help me. Congressman Neal’s office stays in contact and has processed my paperwork to no avail. I even spoke with the Congressman but his aide says OPM refuses to answer him now. How ludicrous! Senator Kennedy’s office has been in contact and the lady there told me that Senator Kennedy has taken a personal interest in my case to no avail. It’s difficult for me to believe one of the greatest and most powerful politicians of our time can’t get an answer from OPM. My surprise has been Senator Kerry’s response which has been none even though I was a staunch supporter of him and am a Viet Nam era disabled veteran.

You know something Oprah, if I can’t get this operation I pray that I can open the door for others so that they don’t have to suffer the physical pain associated with the back and prevent the peripheral pain the family also suffers from.

Oprah, I implore you to please tell my story if not to help me but others like me so that some Dad will get the chance to dance with his daughter that I didn’t. Thank you and may God bless you!

Amy

Dear Oprah:

It is maddening how the insurance industry has been able to dictate our lack of health coverage, overruling our treating physicians demands. ERISA laws have enabled this phenomenon. In my opinion, paying ins. premiums without getting medically necessary coverage is criminal embezzlement.

I am 38 years old, single, unemployed, formerly an attorney in CA and now living with my parents in WI. On 9/18/01, I came out of liposuction surgery with torn lumbar discs at L4/5 & L4/S1. 6 years later and I’ve still not received spine surgery. Treatment delay is partially due to a medical malpractice lawsuit. My lawsuit was dismissed because I couldn’t get a proper medical diagnosis, but I couldn’t get a proper medical diagnosis with an active lawsuit. After my lawsuit was dismissed, I was miraculously referred to a spine surgeon! PacifiCare denied my surgeon’s request for a 2-level Charite artificial disc replacement (ADR) implant, on the grounds that the device was “experimental and investigational” even though the device was FDA approved! Ironically, the Federal Employee’s Health Benefits (FEHB) plan, has determined that once the FDA approves a drug or medical device, private health insurance companies can no longer claim it is “investigational and experimental.” This policy only applies to federal employees. I exhausted my appeals with PacificCare and the CA. Dept. of Ins.

When my COBRA benefits were almost over, I had Dr. Fred Geisler, another spine surgeon, file a preauthorization request for a hybrid surgery (1-level fusion & 1-level ADR). PacifiCare again denied this procedure stating that it would cover the fusion level but not if it was performed at the same time as an ADR. When I pointed out my injury was the same at both levels, and ADR is just an alternative FDA approved remedy to fusion, my insurance policy was abruptly cancelled. Eventually PacifiCare reinstated my policy, but it was too late for my surgery appeal.

Catherine

At 39 w/ 2 & 3 yr. old child and chronic back pain I was told by 2 surgeons I needed ADR surgery. Fusion wouldn't work in my case as I would have a cascading problem, need 4-5 more surgeries and be in a wheelchair in 20 years. Insurance would pay for fusion, but not ADR surgery. I went to Germany and we spent our life savings on ADR surgery. The surgeon said I was the clearest case for surgery he had ever seen as I had *NO* disc. He said w/o it I would have been paralyzed in roughly 9 months. Oh and the surgeon wouldn't automatically do the surgery, he had to be sure there was no other option - in my case there wasn't. Hope that helps the cause...Catherine

“Wife of Dean”

I’m a 32 year old husband and father of 1 and a 2 year olds. I suffered a back injury while snow shoveling that took away my life as I knew it. I had a 2-level Artificial Disc Replacement surgery with the ProDisc-L device. This procedure gave me my life back. My health insurance carrier, HealthNet, denied coverage of my procedure, 3 days before my surgery on 2/22/07, citing that the ProDisc-L was “experimental.” ProDiscs had been approved by the FDA since 8/14/06 and had been used for nearly 20 years with great success overseas. I had to pay 100% out of pocket for my $54,000 surgery.

My wife (a Massage Therapist) and I, spent a year researching surgical options for my condition. We joined support forums, read medical studies, and compared procedures, devices, and surgeons literally, from around the world. Our research brought us to the UNDENIABLE conclusion that Artificial Disc Replacement with the ProDisc-L offered me the best possible chance to perform my job so that I could provide for my family once again. It was also the procedure that would be the least likely to cause me further problems later on, a key factor when considering my young age.

Summary of Treatment
I was placed on disability from work. I underwent chiropractic treatment, epidural injections in the spine and attended pain management. I then had a consultation with Orthopedic Surgeon James Yue of Yale School of Medicine, who recommended a 2-level Artificial Disc Replacement with the ProDisc-L device, but the device was not yet approved by the FDA. I knew this from my research, I also knew that this was my best option and I was willing to wait a bit longer. I began Orthopedic Massage, Swedish Massage, and various body treatments to aid in muscle relaxation, to detoxify muscle tissue, reduce inflammation in joints, etc.

Summary of my Injured Condition prior to Surgery
I was completely disabled. I was unable to provide for my family. I was unable to be a husband or a father. The lives of my babies were passing me by. I was on high levels of prescribed narcotics for the pain, which came with a host of side effects. The side effects required over the counter medications. I had to resort to lying down in my bed for the majority of my day. I could not sit, stand or walk for longer than 15 minutes without having to stop and lay flat. Muscle tone throughout my body deteriorated from lack of movement and I suffered from painful muscle spasms, constantly. May I most respectfully remind you at this point that, I just turned 32 and I was strong and healthy before my injury.

Why Artificial Disc Replacement was my Best Surgical Option
Because I was only 32 years old, spinal fusion was not being recommended, and was in fact, what I was trying desperately to avoid. Fusion has been the traditional treatment for herniated discs; however, it has several consequences that are extremely undesirable for a young person.

-Fusion PROHIBITS the vertebrae from having ANY future movement.
(ADR PRESERVES almost all range of motion.)

-Fusion places extra stress on the surrounding discs, which may wear them out prematurely. This can make future surgeries necessary.
(ADR does not place extra strain on the surrounding discs.)

-Fusion requires a long 6 month recovery time, during which, bone must grow to fuse the vertebrae. (ADR has a much shorter recovery time, and faster return to work time.)

At a pre-operative appointment with Dr. Yue on 10/2/06, Dr. Yue informed me that 3 days prior, Synthes, the ProDisc's manufacturer, made an unanticipated decision to allow only 1 disc to be issued per patient. I could wait an unknown length of time for Synthes to begin issuing 2 discs per patient in the US, or I could go overseas to have 2 levels done with the most experienced ADR surgeons in the world. I then asked Dr. Yue to make a referral to world-renowned surgeon Dr. Rudolph Bertagnoli in Straubing, Germany. I could wait no longer.

Dr. Bertagnoli also recommended a 2 level ProDisc procedure. I got a surgery date of 3/9/07. Just prior to booking my flight, I learned that Synthes had reversed it's decision, giving American doctors the go-ahead to schedule 2 level surgeries! Two days later, I scheduled my surgery for 2/22/07 at Yale in New Haven, CT.

My surgery was a great success. It has been 3 ½ months. I am virtually pain free, working 5 to 7 days a week and I am enjoying life. We had to borrow the money for my surgery and live well below the poverty line for a year, barely able to financially survive, and yet my wife and I agree that the sacrifice was worth it and this was MONEY WELL SPENT. Although, we still wonder... why is it that we pay HealthNet money every week for coverage when they weren’t there for us the one time we needed them?

Julaine

I have had back pain since 1991. I was constantly in the emergency room for my back going out. I was given pain meds and sent on my way. I sought out many surgeons only to be told I was to young for problems and they would not do a MRI.

In 2004 my condition worsened. Everyday I woke up in severe pain. My physician sent me to pain management dr. who then sent me to a spine surgeon. The surgeon said he would not do anything to find out what was wrong as I was way to young for back problems. Meanwhile I could barely walk, I was extremely depressed. My children had to take over and grow up and help around the house. I then saw another spine surgeon in June of 2005. He did MRIs and Ctscans and determined I had spinal stenosis, schmorls nodes, DDD at L3,4.5. As well as bulging discs. He recommended ADR. Blue Cross denied saying it was investigational/experimental/not medically necessary. We appealed it and meanwhile waited.

In the end of July I woke up one morning not able to feel my legs. I could not move nor could I feel the sensation to urinate. My friend took me to the ER, they had a neurosurgeon come in. He admitted me. Then in walks the surgeon I had originally saw, the one whom said I was to young for back problems. He was now the spine surgeon that would be helping me.

I sat in the hospital while they did nerve testing, myleograms, discograms. After 4 days of being there, the surgeon came in and said Blue Cross would not be covering my stay in the hospital nor pay for any surgery whatsoever as it was not medically necessary. Never mind that I cannot feel my legs nor go to the bathroom. I thought the hospital would kick me out. A gentleman from the social service department of the hospital came in and said the hospital would not make me leave and they would take care of all my needs. After testing and 4 weeks in the hospital I had a fusion on L5 and laminectomy on S1.

After surgery I remained in pain. My pain management Dr. told me that I would get better care in Los Angeles, so we sold our home in December 2006 and moved and saw Dr Kropf at LA spine institute. He recommended I get a ADR at L4 and remove the existing hardware at L5.
Blue Cross denied both surgeries in June 2007. They said that the removal of the hardware from the fusion was not medically necessary and that ADR was investigational/experimental/ not medically necessary.

I cannot drive anymore as I lose the feeling in my right leg at no notice, I cannot go to the grocery store. I have fallen down my stairs twice this year. I am on ms contin, cymbalta, percocet, and lunesta. I am 33 years old and my life is over. My childrens lives have been torn apart.

Ron

Dear Oprah:

I am writing in response to Michael Moore’s interview and to let you know about my lack of insurance coverage for a spine operation. For the past four years, I have been in chronic spine pain that has prevented me from doing any regular office work. Finally in October of 2006 I found a hospital that performs operations for an artificial spinal disc replacement called ProDisc. It was cleared by the FDA in August 2006 and St. Mary’s Hospital in San Francisco told me Blue Shield of California was covering the operation. I setup the operation for Dec 27th, 2006 and held my breath.

Well the operation wasn’t successful, and to top it off I received a letter from Blue Shield stating they wouldn’t authorize the operation; however, they would cover the hospital bill. It didn’t don on me until it was too late to realize what just happened. I didn’t know there would be two bills, much less that I could be denied after the operation unless someone was lying about coverage. The $60,000 hospital bill included a lot of erroneous charges, and another one for $8000 from the surgeon that was ambiguous. I guess I learn the hard way. After surfing the net I found a forum that also told of stories just like mine (adrsupport.org). The insurance authorized the operation, but wouldn’t cover the cost of the disc or the surgeon’s fee.

To be exact, this is the standard response from almost all insurance companies in the Unites States. Contrary to all the positive statistics in favor of ADR, all the supportive spine doctors, and happy patients (though not me); the insurance companies won’t budge. They give no reason other than “it’s experimental”. Well after 4 years of successful surgeries in the USA and 18 years in Europe, insurance companies refuse to pay even if the patient is paralyzed. In addition to flushing the humanity of paying consumers down the toilet, they are now hiding behind federal laws that prevent people like me from taking them to court -- essentially rigging the system before people write in to obtain authorization. That’s correct. They rigged the system to prevent anyone from redressing them in the court of law for negligent behavior. There are no consumer rights with regard to insurance companies.

Now I am disabled with mild scoliosis from the surgery, shrugged off by my doctors and therapists, and cast aside because I cannot afford $600 spine doctor office visits for out-of-patient doctors. I cannot find any support from my insurance company to guide me in a positive direction. I certainly am not dying from cancer, but I do want to work and cannot move forward even though I pay a substantial sum each month toward insurance and therapy. This usually adds up to 1000+ a month. For someone who isn’t working this is an outrageous amount to be forced to pay.

Thanks for covering this topic.

Karin (Nairek) - My Journey Into Healthcare Hell

My story begins with a fall that I had in 2001. I slipped & fell flat on my back on ice on a cold January morning on my way into work. I laid there on the ground for a minute thanking my lucky stars that I managed to not smash my head on the ground. Through my pain, I got up & worked the rest of the day not realizing that this was just the beginning of my painful journey. One week before Christmas 2002, as I was sitting in traffic, I was rear-ended by a young woman who wasn’t paying attention to the traffic in front of her. I had seen her coming in my rear-view mirror at the last second. There was no where for me to go. I planted my foot on my brake pedal & braced myself for the impact. By the grace of God, it was a miracle that I was able to keep my car from lurching forward into the car in front of me. This accident compounded the initial injuries from my fall. This began by downward spiral into the abyss of daily pain.

I met with several doctors over the years. All of whom were unable to help me, since my MRI scans didn’t show much of anything. The problem was, they didn’t order the right test to see where my pain was coming from. In my experience, when a doctor finds out that his patient is a Worker’s Comp or No-Fault case, you’re lucky if he even sees you for five minutes after making you wait an hour or more in the waiting room. Then you get the “uh huh, yeah, OK, here are some scripts for pain killers and muscle relaxants. Come back in eight weeks”.

It took me years to find a doctor who would listen to me. I explained to him that the narcotics, physical therapy, steroid injections, weight loss, spinal stimulation all failed and that no one believed me about my pain. This doctor ordered a discogram and the test showed a torn disc in my lower back. I was finally vindicated! I was offered three choices of treatment. An IDET surgery to seal the tears in my disc, a spinal fusion, or total disc replacement. I opted for the IDET surgery since it was much less invasive than the other two choices. The IDET ultimately failed after five months.

After a year of research, I decided to pursue the total disc replacement. The only problem was, I didn’t have enough No-Fault benefits left to pay for the surgery which was in the neighborhood of $75,000 +. I then turned towards my private healthcare insurance for help. Empire Blue Cross Blue Shield denied my request for coverage. The denial stated that disc replacement surgery was experimental/investigational. I then appealed this decision with Empire Blue Cross Blue Shield and was denied again for the same reason even though this surgery has been approved by the FDA since October 2004. I then appealed to the New York State Department of Insurance. They sent my appeal out to an “outside source” to review my appeal. All 147 pages of medical records, research on total disc replacement, a letter from my employer stating they support my decision to have this surgery, etc. I was only able to convince one out of three doctors to reverse Empire Blue Cross Blue Shield’s decision. I needed two doctors to reverse the decision.

I am still fighting the denial. One of the doctors from the “outside company” doing the review keeps ignoring facts that I have highlighted which shows that when the discogram was done, the dye leaked out into the canal showing a disruption of the disc. This doctor claims that everything is normal when apparently everything is not.

I work full-time and do what I can to take care of my husband. He is forced to take care of the household, as I’m not able to do. At this time, starting a family isn’t feasible in my current condition. So I decided going to school part-time to pursue my Associates Degree in paralegal studies would be a good thing. I have a very busy and painful life, but I refuse to be held back by it. My ultimate goal is to complete school, have this surgery, and for my husband and I to have the family that we want. I’ll keep fighting the good fight. It’s worth it to me!

Craig

This has been a journey, almost 12 years in the making. In 1995, I had a laminectomy after my disc at L5 S1 ruptured. L5 S1 is the lowest disc space in the lower part of your back. Nearly at my tailbone, it ruptured and after about a year of conservative treatment, I had the laminectomy. It worked and I felt great for about 5 years. Then in 2000-2001 started having some back pain, just from regular around the house type of activities. I'd get some massage therapy or PT and would be back to normal. Sometimes I'd get an epidural shot, that would reduce the disc swelling, and I'd be fine.

In July 05, things just started not to feel right. A twinge of pain here, hint of pain there. They did the run of the mill tests and found I had two herniations this time. Did the epidural shots and they didn't work, so on to PT. Did that a few months but became frustrated when all we did was stretch. So, I hijacked the exercise book, made copies for myself and started doing PT at home. In April of 06 had an "attack" where I was temporarily paralyzed and spend a two full days lying down. Afterwards for a full week, I found it difficult to walk, with enormous amounts of back pain. Doctors ordered a disco gram, and they finally diagnosed me with Degenerative Disc Disease.

So, the next month, we discussed treatment options. They told me all about Artificial Disc Replacement surgery. I was stunned when I found out that the medical coverage that I pour $500 a month into wouldn't cover the ADR surgery that was recommended by the surgeon! What was I going to do now? Well, just decided that I was young, healthy and didn't have $55,000 needed for the surgery so I was going to just wait it out. How bad could it get, right?

So I figured I could wait this thing out. Then in July 2006, another flare up occurred. This one was worse because it hit while I was on a business trip. There I was, in the middle of these meetings, in constant pain, unable to sit for more than about 10 minutes. I'd spend mornings on the hotel room flooring, trying desperately to stretch myself out. The flight home was bad, so I was back at the doctor within a week. More pain meds. October, it happened again. This one was the worst – I was unable to move, couldn't stand, couldn't sit, and couldn’t walk. I just lay in bed for two weeks, unable to get out to work, or even to get out of bed. At this point, we filed a request with my insurance carrier, United Health Care of Texas to see if they would cover the two level disc surgery that I needed. On November 14, they sent me their denial letter telling me that there was not enough information available to state, with any degree of certainty that an artificial disc replacement was medically necessary, nor would provide any relief for me. I spoke to my surgeon who said if I were to pay out of pocket myself, it would cost over $55,000.

Fast-forward four months later, I changed insurance companies and Aetna paid for my surgery. I always wonder how two separate Health companies can view the same procedure differently? It was amazing to compare one’s denial letter to ones’ approval letter. The same reason one was denying it, the other was approving it. I am one of the lucky ones. Without some divine intervention, I would still be taking a week off from work each quarter to rehab my back. Or I would have put my family in financial ruin, all because my health insurance company knows what’s best for me.

Brady

I am now a healthy 43 year-old male. I ruptured the L5/S1 disc as a teenager through sports injuries and went most of my adult life with severe Low Back Pain. I tried every possible conservative treatment available to man. When I was 39 years old, the pain became unbearable and was affecting my ability to work and provide for my family. In fact, everything in life was miserable due to the chronic pain.

Every spine surgeon that I saw recommended Artificial Disc Replacement (ADR) or Fusion. All three of the surgeons I consulted with in detail suggested that ADR would be my best opportunity for success to avoid adjacent level breakdown and for many other reasons. My personal research for over two years told me the same thing.

I chose a surgeon on my CIGNA health plan and submitted multiple requests to the insurance company for ADR approval. It was denied each time and only a fusion would be approved. I went through three appeal processes, all were denied immediately. At that point I was desperate. In the summer of 2005, my surgeon (Doctor Kenneth Pettine, Fort Collins, CO) informed me of the Kineflex/Charite FDA study. I was able to get into the study that had a very limited number of available slots. My surgery was September 5, 2005 and I received the Kineflex artificial disc. All has gone well. With regular exercise and stretching, I have a new life and one without chronic pain.

(Stories are continued on the next topic.)
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Fell on my ***winter 2003, Canceled fusion April 6 2004
Reborn June 25th, 2004, L5-S1 ADR Charite in Boston
Founder & moderator of ADRSupport - 2004
Founder Arthroplasty Patient Foundation a 501(c)(3) - 2006
Creator & producer, Why Am I Still Sick? - 2012
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  #2  
Old 06-21-2007, 02:46 PM
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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
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Fell on my ***winter 2003, Canceled fusion April 6 2004
Reborn June 25th, 2004, L5-S1 ADR Charite in Boston
Founder & moderator of ADRSupport - 2004
Founder Arthroplasty Patient Foundation a 501(c)(3) - 2006
Creator & producer, Why Am I Still Sick? - 2012
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  #3  
Old 06-21-2007, 02:50 PM
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Thanks all for your stories! Keep sending them!
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Fell on my ***winter 2003, Canceled fusion April 6 2004
Reborn June 25th, 2004, L5-S1 ADR Charite in Boston
Founder & moderator of ADRSupport - 2004
Founder Arthroplasty Patient Foundation a 501(c)(3) - 2006
Creator & producer, Why Am I Still Sick? - 2012
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Old 08-18-2008, 04:49 PM
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Unfortunately, our story continues...
_________________________________________

MY STORY - NANCY

On Monday July 21st I will see you Dr. Windsor and I wanted you to know my story before hand…

In the summer of 1993 I got in a fight with a 75lbs suitcase and it won, when I tried to "she-woman" it up on top of the roof of my car. I herniated L3/L4 and L5/S1-somehow missed L4/L5.

By the time I got back from Canada (our destination) to Massachusetts (my home at the time) I could barely walk.

My PCP ordered X-rays and could actually see the herniations on the film, she sent me to my first Ortho (Omar Al-Masri, MD). He immediately said I required surgery, my son was not even 5 at the time, and I said no way. He told me I would be in a wheelchair by 40.

I told him get me off the pills because I need to go back to work. After 3 months of constant bed rest and with the help of a chiropractor I was able to discontinue all meds and return to work.

I had my first surgery in July 2000 (8 years after the initial injury). Caging was implanted at L3/L4 and micro discectomy at L5/S1. I also required a blood transfusion that day because I was so week. Bear in mind I never stopped working throughout this whole thing.

12 Days post op I sprung a leak after becoming nauseated and they had to go back in to repair the leak. This was Surgery #2. I was almost in a coma by the time I got to the ER at St. Joe’s

Three weeks later I was rear ended by a taxi cab driver (no damage found thank God)...

8 months of PT later and I was 85% better-that was until that day...

That day, is a day I was at work and tripped over a box backwards (April 2002). I never fell down-I caught myself from falling. The job sent me to a Workers Comp doc in the box who had no idea how to even X-ray me!

My job never filed a workers comp case and when my ortho (Plas James, MD) decided he needed to remove the hardware because something happened at the op site that was causing my pain my job said it was pre-existing.

I never got a lawyer, I had the surgery (#3 surgery), Dr. James discovered my fusion had actually cracked, I was not being paid, I went back to work 3 weeks post op still wearing my "turtle" and never had PT postoperatively.

My company was finally bought by Home Depot. They granted me LTD bennys no questions asked.

My pain worsened after the removal of the hardware...ortho said go back in and put caging back in to secure it up...okay (4th surgery) had PT thank God because at this point I am so full of scar tissue I now have CHRONIC MYOFASCIAL PAIN SYNDROME'.

I went back to work part time in June of 2005 and by November 2005 I went out on full time disability.

Got Social Security Disability on my first try (May 2006)

Exactly one year after I first got disability from Home Depot (November 2007) Home Depot sent me a letter saying I was cured and to go back to work---a miracle has occurred call the Vatican!!!!

They stopped my LTD payments, my health insurance was cancelled, I lost my savings, and I lost my home to foreclosure and went 18 months without ANY MEDICAL TREATMENTS at all. Needless to say I have a lawyer working on this for me and need a PM Doctor on my side as well.

Because I worked 20 years I did not qualify for Medicaid during that 18 month period. I went that long with no treatment for the multiple diagnosis of....

• Failed Back Syndrome,
• Disc Herniation (cuz L4/L5 finally blew out-see MRI from March 2007)
• Chronic Myofascial Pain
• SI Joint Dysfunction
• Arthritis
• Sciatica
• Migraines
• Panic attacks
• Severe depression

...NO MEDS NO TREATMENTS...18 months

Brings us to today -finally got Medicare (May 2006) so excited made my appointment with a PM who my former manager recommended- Dr. Allen Hord. I was so excited, he is an Emory doctor and my son is a senior at Emory. I admitted immediately to him that I had smoked some pot for the pain while I had no health coverage and he went off on me!

I saw him one more time for bi-lateral SI injections that were not effective. I don’t believe in lying to a doctor nor do I think a doctor should treat you like crap for being honest.

I have warned my ortho (Dr. James) that because he spoiled me with his greatness and understanding I will not stop till I find someone who will treat me with mutual respect.

I have not smoked pot since I saw that PM- I am so scared that I will not be taken as a pain management patient and treated, then again I went 18 months w/o so I guess I can go the rest of my life w/o if need be.

Pain management is an ugly animal for both the patients who suffer and for the doctors who treat them.

I look forward to meeting with you.
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Fell on my ***winter 2003, Canceled fusion April 6 2004
Reborn June 25th, 2004, L5-S1 ADR Charite in Boston
Founder & moderator of ADRSupport - 2004
Founder Arthroplasty Patient Foundation a 501(c)(3) - 2006
Creator & producer, Why Am I Still Sick? - 2012
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  #5  
Old 10-14-2008, 07:35 PM
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Default Please send me your stories!

Folks, please continue to send me your experiences about your journey to wellness! I will make minor edits (format & spelling), then post to this topic. I'd like to send this "book" to the presidential candidates soon!

Please email them to my email address below, thank you. I am keeping this topic closed and will open it only for adding stories.
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Fell on my ***winter 2003, Canceled fusion April 6 2004
Reborn June 25th, 2004, L5-S1 ADR Charite in Boston
Founder & moderator of ADRSupport - 2004
Founder Arthroplasty Patient Foundation a 501(c)(3) - 2006
Creator & producer, Why Am I Still Sick? - 2012
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