BIRDSPARK'S STORY

AN ODYSSEY OF DISCOVERY:
MEDICAL MISGUIDANCE
QUESTIONABLE SURGICAL NECESSITY
HORRIFIC ENDLESS PAIN

This is my story, from the first signs of spinal damage to my current treatment and condition...
1. ONSET OF SERIOUS MEDICAL PROBLEMS MEDICAL MISGUIDANCE AND MISDIAGNOSIS

2. THE SEARCH FOR A SUITABLE SPINAL SPECIALIST AND THE QUESTION OF THE NECESSITY OF SURGERY
3.THE ISSUE OF PAIN MANAGEMENT SPECIALISTS TO ADDRESS THE REQUIREMENTS OF PEOPLE WITH AN HONEST NEED FOR THE VARIOUS PALLIATIVE CARE OPTIONS, WHICH CAN BE THE DIFFERENCE BETWEEN BEING BEDRIDDEN FROM WITHHOLDING PALLIATIVE CARE, OR BEING RESTORED TO AN ACCEPTABLE QUALITY OF LIFE USING PROPER PAIN MANAGEMENT

1. ONSET OF SERIOUS MEDICAL PROBLEMS AND MEDICAL MISGUIDANCE AND MISDIAGNOSIS
In 1996 I began experiencing very severe pain in my lower right back mostly when I was sitting at my desk and working, which could be for hours at a time. I went to my Primary Care Physician (referred to as PCP from this point on) to address this rapidly growing problem. Because of my complaints of extreme pain he prescribed pain medication and sleep medication. The PCP prescribed the sleep medication because the pain was causing me peripheral problems including severe anxiety and insomnia.

After giving me a complete physical the doctor erroneously felt that my pain was psychosomatic, and referred me to various psyhopharmacologists and psychiatrists, during this initial treatment period, which lasted from 1996 to 2000. The pain continued to increase and began to effect my left thigh and my right leg by the year 1998, escalating to a point that still exists today. Finally, around 1998, after failed efforts by a number of psychiatrists, I asked the PCP to approve an MRI of my lower back. It seemed to me to be a good idea to rule out the possibility of a spinal problem, instead of accepting the PCP's diagnosis of a psychosomatic reason for this now unbearable pain. I was told by the PCP that my current health insurance carrier (U.S. Healthcare) made it all but impossible to get an MRI (I found out later that this was completely false). From 1998 to 2000 I became more and more insistent that I be allowed to get an MRI to help diagnose my increasing and nearly intolerable pain. Finally, in the year 2000, a larger and more mainstream medical insurance carrier took over the management of my former insurance carrier (Aetna took over U.S. HealthCare). In June of 2000, I received approval and got my first lumbar spine MRI (see diagrams to the left). The true and accurate reason for my very severe lower right back, left thigh, and right leg pain, which had increased dramatically, was finally revealed.

SEE THE TOP X-RAY TO THE LEFT

SEE ALSO THE BOTTOM X-RAY WHICH DETAILS THE SPINAL DISKS INVOLVED

THE ADDITIONAL X-RAYS AND GRAPHICS SERVE TO HELP VISUALIZE THE SPINE AND THE SURGERY AND THE PLACEMENT OF THE TITANIUM BRACE AS WELL AS HOW A HEALTHY SPINE LOOKS

I later found out that the PCP, whose insistence that my pain was psychosomatic, was not being fully honest with me regarding the availability of an MRI for the diagnosis of my pain. I discovered that all I needed was the approval of a neurologist to get an MRI paid for by my former insurance carrier (U.S. HealthCare). Had I known this I would have seen a neurologist and surely would have gotten the approval necessary from my insurance carrier to pay for an MRI anytime from 1996 through 2000.

In the four initial years, from 1996-2000, that passed without a proper and complete diagnosis of my lower back pain, including useless visits to at least five psychiatrists and psychopharmacologists, I was repeatedly misdiagnosed as having severe depression, which the psychiatrists and psychopharmacologists believed was causing the pain I was experiencing. I was also prescribed a combination of a variety of anti-depressants and benzodiazepine medications (Valium, Xanax, and Clonopin are examples of benzodiazepines - Zoloft, Celexa, and Prozac are examples of anti-depressant medications). Although the anti-depressants did little to relieve my pain, the benzodiazepines were useful in treating my anxiety, which, by the year 2000, was very severe, due to my persistent and extremely severe pain. However, the psychiatrist that prescribed the benzodiazepine medication called Xanax did not tell me that it was, perhaps, the most powerful and addictive of the benzodiazepines, and that it should be taken with extreme caution. In fact, I was prescribed a dose so high that I became deeply addicted to Xanax, and once I realized the extent to which I was being harmed by Xanax it was too late to easily withdraw from this drug. I experienced a full blown withdrawal episode, lasting for about three months, when I removed myself from the regular ingestion of Xanax. I did this because I no longer trusted the psychiatrist that had done so much damage to my body with this drug. My current psychiatrist (treating me as of the writing of this statement, in 2007) in whom I have great trust, has explained to me that Xanax is a useful drug when prescribed sensibly, and when the patient is warned of the risks and dangers of taking addictive drugs. The psychiatrist that prescribed the Xanax to me never explained any of the consequences and dangers of taking this kind of addictive medication, and did, in fact, give me a very strong daily dose of Xanax, such that, along with the extremely severe pain I was experiencing, caused me to endure the terrible consequences of toxic withdrawal of this particular drug.

When my pain began in 1996 I was the sole proprietor of my own small business. I was a personal Computer Technical and Training Consultant, and a Computer Network Architect. By late 1999 I had to begin reducing my workload, slowly eliminating my client base. On September 17, 2001, working in what was formerly a fairly successful and active small business for about twelve years, I informed my last client that I could no longer work for him or anyone else, because the pain I was suffering from was so severe that I had trouble getting out of bed. From that date on I was unable to work or function productively in my personal life. The MRI which I was given in June of 2000 exposed the reason for my severe and excruciating pain, and the peripheral problems with my left thigh and my entire right leg. The initial diagnosis was that I was suffering from Spinal Degenerative Disk Disease, and Spinal Arthritis, specifically from severely damaged and crushed spinal disks and crushed nerves in the region from Sacral Disk S1, to Lumbar Disks L1, L2, and L3, which this original spinal MRI revealed. I was informed of this by the PCP whom I had trusted with my health care from before 1996, and through the year 2000.

Upon receiving the news of my severely damaged spine I became rather irate with this PCP and immediately dismissed him as my Primary Care Doctor. This began an incredibly frustrating search for both a Spinal Neurosurgeon to address my spinal damage, and a new HMO or medical group practice to manage my daily health needs. My now former PCP's indifference to my repeated, and increasingly urgent requests for a spinal MRI was based not only on my own instincts, but on the advice of other doctors that were my clients while running my small business. They became aware of my pain problems during my consulting visits to their office locations. They had urged me to get the MRI as soon as possible as far back as 1996. I had no choice but to eliminate this PCP from any further medical decisions and actions on my behalf. His unchanged diagnosis and insistence that my pain was psychosomatic, even after four years of increasing intensity of pain, was inexcusable to say the least. I had peripheral problems which were surfacing by the years 1999 to 2000, and making the pain I was enduring even more unbearable. I began suffering from severe anxiety related to my acute and very long term insomnia, and I was developing a severe depression that began to surface from my realization that I was losing my small business, which I was very proud of, as well as developing traumatic stress syndrome from the years of untreated and improperly medicated horrific pain, which I was experiencing as far back as 1996. I still suffer from the misdiagnosis and medical misguidance of the original PCP that treated me in the years from 1996 to 2000.

2. THE SEARCH FOR A SUITABLE SPINAL SPECIALIST AND THE QUESTION OF THE NECESSITY OF SURGERY
In late 2001 I was forced to move from my apartment and into my parents home because I was completely out of any and all money I was bringing in from my now terminated business, and I had no savings or assets of any value. I was at the lowest point of my life psychologically and physically. It was a hard decision to make and carry out, but one which had no other option. I began living in my parents home and have lived here since 2001.

The search for a new HMO practice, or medical group, to manage my additional chronic ailments that I have suffered from since my childhood, was a nightmare. It was complicated by the indifference of the doctors I encountered in the three or four HMO's I tried to become involved with. Additionally, I was searching for a Spinal Neurosurgeon, for assessment and further diagnosis of my growing Spinal difficulties. This too was a terrible experience, one which had me dragging my aching back and legs while carrying heavy MRI, X-Ray, and CT Scans of my spine, which I had been allowed to get by my current insurance carrier. I was also simultaneously trying to find a reputable psychopharmacologist to assist me in dealing with my growing acute traumatic stress, my severe and acute anxiety, and my acute and persistent insomnia. Throughout this process, which lasted from about mid-2001 to late 2002, I was repeatedly inappropriately given high doses of improper and weak pain medication because the doctors in these various medical HMO's did not want to prescribe the pain medication necessary to effectively reduce the pain I was suffering from.

Importantly, the pain medication I was prescribed had high amounts of acetaminophen, which was an integral component in the pain medications I was being prescribed. I was warned, not by the doctors, but by my pharmacist at the time, a very decent and honorable pharmacist from the CVS Drugstore Chain, that I was talking a toxic level of acetaminophen. In fact, on one revealing blood test in around 2002, the indication was that my Creatinine-Kinase level was 300% higher than the highest acceptable level, causing me to realize that some unusual symptoms I was having, that I could not understand, were from the excessive doses of acetaminophen which was part of the pain medication I was prescribed by the HMO doctors, those symptoms being extreme lethargy, extreme muscular aching, dry-heaving, and full body muscular weakness (which were in addition to the specific and longer term severe and horrific lower back and right leg pain, and the burning and other symptoms associated with my left thigh). The over-ingestion of the acetaminophen in the pain medicine I was taking caused the reaction to the excessive dosing and additional ingestion of the prescribed weak pain medication with the acetaminophen in it, which I was taking too regularly. The net result was that I did suffer some physical damage from the medication being prescribed at that time, specifically from the acetaminophen in it, causing a broad range of ailments falling under the category of myositis, and specifically rhadbdomyolysis. To this day I can no longer take any drug with acetaminophen in it, or acetaminophen alone, nor can I take any statin drugs used in the treatment of high cholesterol and triglycerides, which I suffer from, because I have excessively high bad cholesterol. Both acetaminophen and statin drugs can cause the symptoms and diseases associated with myositis and rhabdomyolysis, and since I have become sensitized, or allergic, as the doctors say, to these drugs, I must not take them any more, as they are dangerous to my health.

Finally, in mid-2002 I found a suitable Spinal Surgeon, and after previous difficult and stressful diagnostic sessions with two other very impersonal and behaviorly abusive Spinal Neurosurgeons, I was given the repeatedly diagnosed bad news that surgery was highly indicated because of my specific spinal condition. Although an attempt to manage my pain and spinal deformity with physical therapy was tried in mid-2002, by the Spinal Surgeon that I decided to work with, the physical therapy was aborted prematurely when my pain increased dramatically during the physical therapy sessions. I had to go to the emergency room for treatment of acute horrific pain, trips I was used to by now, having visited at least three different emergency rooms approximately five times between 2001 and 2002, for complications from pain stemming from my spinal disease.

In January of 2003 I had a 6-7 hour operation for the dual purpose of getting relief from my pain and also having a titanium brace screwed into my spine to hold my spine together, and to assist in the fusion process, which was attempted between my S1-L5, L5-L4, and L4-L3 disks. The operation was deemed a failure after I began to experience an even greater range of pain, not just in my lower back, but spreading to both of my thighs, my left and right legs, and both feet. The main reason for the surgery was to relieve me of the pain I was experiencing. From 2003 to present day I have experienced this new level and range of pain. Instead of becoming productive and returning to work, which I had hoped would be the outcome of the surgical procedure and the screwing of a titanium brace into my spine at the S1 to L3 area of my spinal disks, I experienced an increased and wider range of pain, causing me to have trouble walking, and limiting my ability to do many activities, like grocery shopping, laundry, home maintenance, etc..

In 2002 I began seeing a very good Psychiatrist, due to severe psychological problems stemming from the severe pain and poor medical treatment I had experienced. He began treating me for a variety of problems, mainly depression, anxiety and post-traumatic stress syndrome, sleep deprivation and insomnia. He also referred me to an excellent Pain Management Specialist.

Unfortunately, having had consultations with approximately 14 various Neurologists, Spinal Neurological and Surgical Specialists, Spinal Surgeons and Osteopathic Specialists, from around 1999 to 2006, a disagreement in consensus has arisen as to whether or not surgery is generally indicated in spinal damage similar to my own. Although the majority of these doctors are in agreement that my case was particularly difficult, and surgery was the only option I had to save my sanity, from the horrific and relentless pain, and also to save the region of my damaged spine that is graphically defined in the X-rays to the left. Along with the additional X-rays, MRI's, and CT scans I have received, once my spinal damage and decay were finally documented, some doctors have felt that the surgery might have been unnecessary.

I have done extensive research with respect to my own various medical problems arising from my spinal damage. Only two of the many doctors that I consulted with felt that pain management alone would have been sufficient to give me the relief necessary for my body to naturally heal itself in the spinal disk areas that were surgically treated and partially repaired. The surgery was, in large part, a failure, in that the pain in my lower right back, left thigh and right leg has expanded, and become much worse over time, now effecting both legs, from my thighs to my shins and feet, to my right and left lower back. Lately, a new area at the shoulder-blade level, which seems to be a possible area of future spinal degeneration, is causing me to have an often severe pain across the upper-middle level of my back, across my shoulder-blades, from my hand and across my arms and back, and into my other hand.

After recently consulting with Neurologists, and based on a series of December, 2006 CT scans, and the associated reports, it appears that my overall spinal degeneration and arthritis has expanded from its original lower lumbar region to almost my entire spine, in the full lumbar, thoracic, and cervical regions. According to the Neurologists that I consulted with, the report of the CT scan of my lumbar region that was originaly effected, the reports and the scans seem to indicate that the progress of fusion of the areas fused, from disks S1 to L3, have fused too slowly, so much so that the spacers used to help my spine keep the specific disks from re-compressing, have partially failed to do so, causing the re-emergence of my original lower lumbar disk compression (as seen in the top X-ray to the left). This has caused the re-compression of the spinal nerve branches that emanate from those disks, and which effect my legs, buttocks, and lower back.

Although the surgery included the titanium brace used to stabilize the area operated on in my lower lumbar spine, it appears that my lower lumbar region has been compromised and re-compressed once again. As to the argument for or against surgery, each case is unique, and I am confident that my hard work finding a respected surgical team, with a good reputation, to perform surgery, once the phsyical therapy alternative was exhausted as an option which could have possibly eliminated the need for surgery, I feel my decision to have the surgery was based on seemingly sound advice from all of the medical opinions I researched, prior to my commitment to surgery. As long as the surgical team did what they described to me in their explanation of the surgical procedure, the net failure of the pain relief element of the surgery involved poor post-surgical fusion, and a seemingly hastened spinal degeneration.

With the exception of one person, the many people I spoke to, prior to surgery, with similar spinal problems, refused surgery, and have opted to be treated exclusively with pain medication and whatever physical therapy they can cope with.

3.THE ISSUE OF PAIN MANAGEMENT SPECIALISTS TO ADDRESS THE REQUIREMENTS OF PEOPLE WITH AN HONEST NEED FOR THE VARIOUS PALLIATIVE CARE OPTIONS, WHICH CAN BE THE DIFFERENCE BETWEEN BEING BEDRIDDEN FROM WITHHOLDING PALLIATIVE CARE, OR BEING RESTORED TO AN ACCEPTABLE QUALITY OF LIFE USING PROPER PAIN MANAGEMENT

In late 2002 or early 2003 I began treatment for my pain with an excellent Pain Management Specialist. Thanks to appropriate palliative care I am able to do some limited grocery shopping, I can sit upright at a desk for about 30 to 45 minutes, and I can stand and walk for 30 to 60 minutes, before I have to return to bed for bed rest. I am unable to work at any kind of job and unable to earn money in any capacity, now or in the future.

Recent MRI results in December of 2006 indicated that my Spine has further deteriorated based on comparisons with the original MRI done in 2000, as would be expected in a Degenerative Disease condition. New areas of spinal disk problems were discovered at the thoracic and cervical disk locations, and there was clear evidence that the fusion process that should have aided the pinched nerves in my lumbar spinal disks had failed to do so, and there was possibly new and increased pinching of the nerve branches at the site of the original operation in the lower lumbar region of my spine. The various doctors treating me have told me that the spinal condition is permanent and irreversible.

It is of the utmost consequence to note that the single most important experience that has changed my life, and turned my despair into hope, was the discovery of, and treatment by, this very caring and involved Pain Management Specialist, who is also an Anesthesiologist and Medical Internist. His careful approach to my pain management, using very strong but effective medication, after explaining to me, in extreme detail, all of the side effects and risks to me of taking the drugs I currently take, has given me a rare trust and confidence in this particular doctor. Unlike the past doctors, who prescribed less effective yet strong medications to me, without one word about the side-effects and consequences of taking these drugs, showed a lack of care for myself, and any other patient they may have treated, and this lack of patient education of the various treatment options and effects of the use of the drugs being prescribed, is unfortunately quite common. My current Pain Management Specialist, through the constructive use of pain medication, is very principled in general, and very conscientious specifically with respect to my current pain management.

Thanks to my current Pain Management Specialist's patience and commitment to healing, throughout these past five years of our relationship, I am able to live a life which allows me to have some freedom of movement, in that I can go on short shopping trips, handle doing my laundry, and clean and maintain my living space, within certain limitations. Currently he has initiated an extremely limited physical therapy regimen to help keep my body from atrophying from lack of exercise. Although it is quite painful during and after each physical therapy session, and due to the fact that my spinal deterioration has been documented as increasing and spreading throughout my entire spine, and the fact that my back and leg pain has slowly gotten worse over the past five years, the medicine the Pain Management Doctor prescribes to me has saved me from being bedridden. It took an initial effort on the Pain Management Specialist's part to find the appropriate pain drugs, and the proper dosage levels to combat my pain, but once he established this dosage level, and decided upon which pain medication to prescribe, I rapidly began to return to a limited but mobile condition, that is, I was no longer in fear of being permanently bedridden from the pain that would be horrific and present if I were to stop taking the pain medication I currently am prescribed.

The current newly initiated effort by the government agencies regulating palliative pain management, to create a new program for doctors qualified to become Pain Management Specialists, has helped re-define the controversy over who should be permitted to receive pain medication, and has begun to successfully weed out the "pill-seekers" and drug addicts. These "pill-seekers" and drug addicts have made it very difficult for the legitimate candidates for pain management, who need strong pain medication, to get this medication. There is now a program to segregate and expose these "pill-seekers" and drug addicts, whose selfish, immoral, and illegal drug use has, in the past, caused many doctors to be very hesitant to offer quality of life-changing pain medication to those patients with legitimate and dire need of pain relief. The program has evolved successfully, and a new and more meaningful partnership between federal regulatory agencies and careful and principled doctors is emerging.