Sedgwick CMS Crime Stories
"Killing the Claimant with Sedgwick Kindness"
Who is Gus
Hi, my name is Eric August “Gus” Marquardt. I was born in 1951 the second of two sons to Earl (a Major in WWll who served as a Marine Raider and Recon Marine) and Margaret (a Lieutenant JG in the Navy Nurse Corps). My older brother is a surgeon and my younger brother is a computer programmer. I was raised in the San Fernando Valley and earned a B.A. in Biology at CSUN in 1973. I served for three and half years as a Marine Officer after college. I then worked for Procter and Gamble for 5 years as a Maintenance Engineer and then for what is now AT&T for 20 years before becoming too ill to work on a predictable basis. I have been married for 35 years and have two sons. My wife is an accountant. #1 son is in college about three hours from home and is well on his way to becoming a Mechanical Engineer then perhaps an attorney specializing in Patent Law. #2 son is a Lance Corporal in the USMCR and is currently training for an April deployment to Iraq for 7 months. He’s considering studying to be an Engineer or a Firefighter if and when he returns home in late 2009.
What’s wrong with Gus
I have neuralgia’s of the 5th, 7th, 8th, 9th, and 11th cranial nerves, bilaterally (both sides of the body). Neuralgias cause pain. Lot’s of pain. Severe pain. The most common form of neuralgia is TriGeminal Neuralgia (TGN-5th Cranial Nerve). It occurs in about 1 in 15,000 people on one side or the other of the face, much less frequently bilaterally (on both sides as my case). It is generally accepted as the most painful affliction known to the practice of medicine. Because it is not uncommon for the intense pain, that can be resistant to virtually all forms of treatment, to drive sufferers to commit suicide, TGN is nicknamed the “Suicide Disease”. “Google” “Suicide Disease” learn more. The majority of my pain is a result of Glossophyangeal Neuralgia (the 9th Cranial Nerve). It is every bit as painful as TGN, but about 25 times rarer. As I understand it, the other Neuralgias I experience are even rarer than TGN and Glossophyangeal Neuralgia. Having problems with so many nerves has made my case more complicated and difficult to diagnose and treat.
I am always in pain. It is only the “degree” of pain that varies. I can distract myself at times, but if I relax and clear my thoughts, the pain surfaces to one degree or another. Most of the pain is in my ears even though there is nothing wrong with my ears. This is called “referred pain”. I also hear noises (a high tone, a lower tone, and a water rushing sound) in both ears all of the time. The “volume” of the noise varies along with the pain. The pain usually gets worse as the day goes on.
Although most of the pain is felt in my ears I also experience pain in my teeth, throat, the back of the head, just behind my ears, my eyebrows, and just about anywhere above the shoulders you’d care to name.
The pain can be triggered by many things. Talking, riding in a car, noise, hot or cold drinks, vibration, or merely touching one of the many “trigger points”. These triggers and trigger points vary from one point in time to another in a rather unpredictable manner. Sometimes I’m extremely sensitive to the “triggers”, sometimes not. Some things (riding in a car for example) nearly always cause an increase in pain. The pain can last for minutes, hours, days, weeks, and sometimes months at a time.
I’ve developed my own way to quantify the pain and its effects. There is the emotional scale from 0-10 and the actual level of the pain from 0-10. Sometimes I can be emotionally drained but the pain might not be so bad. Sometimes the pain is virtually incapacitating, but I’m able to hold my own emotionally and not get discouraged. All in all, at one time or another, I’ve had virtually every combination of scores possible.
As I have mentioned sometimes the pain is unbelievably severe. It is difficult to describe, but the best description I can think of is to say that from the shoulders up to the top of my head, it is an intense, crushing, vibration such that I could have never imagined it if I hadn’t experienced it (many times). It’s kind of like not being able to equalize the pressure in your ears while in an aircraft, but a million times worse and being physically “shaken” at the same time.
The only “good news” is that neuropathic pain usually allows one to sleep! Sleep is the “great escape”. I estimate that I get about 15 to 20 percent of what I could get done if I weren’t in pain. All my life people have remarked that they were “exhausted just watching me”, so it’s been quite an adjustment to have to slow down. My ability to function in any capacity is completely unpredictable. Any sort of stress makes things worse. Nuf said.
How did this happen?
Beginning in 1989 my medical records indicate that I began complaining to my doctors that I was “congested” and my ears hurt. I’ve had hay fever all my life and thought that the ache in my ears was related to “congestion”. We tried some meds to reduce inflammation in the nasal passages but nothing seemed to help. I also began “choking” on my whole wheat toast that I had for breakfast each morning. For some reason I was born with a very high “pain tolerance” and I usually just shrug off “minor injuries”. One time I went to the doctor and he noticed a large second degree burn on my arm. He asked me what happened (the burn wasn’t the reason for my visit) and I told him that I had been working on a truck and I had rested my arm on the exhaust manifold. I reasoned (incorrectly) that if I could bear the “discomfort”, that it wasn’t a problem. I was wrong and the doctor pointed that out in no uncertain terms. I don’t do that anymore. Anyway, the “congestion” I was experiencing began causing real problems at home. I had two toddlers but was often cranky and uncomfortable but I didn’t really recognize the problem. Eventually it got to the point that I went to the doctor and he diagnosed me with “depression” and started me on antidepressants and suggested that my wife and I get counseling for the difficulties at home.
Things continued to deteriorate. I became crankier and there were more “disagreements” at home. I became “distracted”, particularly at night, and twice backed into cars, causing minor damage, when backing out of my driveway at night. Although I didn’t think I was “depressed”, I did know that something was wrong. I also knew that I liked my job, enjoyed being a father, had several interesting hobbies, and had a good income. One night during the middle of a “counseling” session, I reached my limit. I told my wife and the counselor that I didn’t need this “bu@@#$%t, my head is killing me, and I’m going home!” The light bulb had finally been turned on, at least to me! I was in pain, not just a little pain, but lots of pain! I had noted that when I drank my tea in the morning, as the tea hit the back of my throat, I experienced a shooting pain that began in my throat and diverged into a “Y” radiating up into my ears. I thought it followed the path of the Eustachian tubes that were “congested” causing my ears to hurt. I went back to the “family doctor” who didn’t agree that I had a problem with pain and referred me to a psychiatrist. I went to the “shrink” many times, enjoyed “venting to him”, and was put on more antidepressants. Finally the psychiatrist realized “I’m not helping you, and I think your problem is the pain you are experiencing”. He called the family doctor’s practice and told them his opinion. The family doctor and his peers (in the group he belonged to) were not receptive to his thoughts to say the least and the psychiatrist (to his credit) wrote a strongly worded letter to the family practice doctors. .
I was then sent to a neurologist who prescribed more meds and agreed with my brother that I was experiencing Glossophyarangeal Neuralgia (a rare and painful condition). About all I can remember from this period is that if I wasn’t at work, I was asleep! I do remember attending my sons’ soccer games and just sitting with my head reeling in pain. After the trial of several meds I requested to be referred to the UCLA Pain Center. My brother had been trained at UCLA and thought that would be a good next step. So I went, had one interview with a pain specialist and was scheduled for a nerve block. The block was a technical success but a diagnostic failure. My eye lid drooped that indicated the anesthesia had been injected into the right spot, but it didn’t affect the pain. In fact, about an hour after the doctor finished, the pain went from mild to excruciating! A much unexpected outcome that I attribute to all of the pressure the doctor put on my neck and face with his fingers to get the needle in the right place. After one “block”, that we later learned is of no value in diagnosing my condition, the doctor decided that I had a “psychological problem” and suggested psychotherapy. Back to square one. A nurse at the family practice thought very highly of a particular Neurologist at UCLA and convinced the doctors at the family practice to send me to her. Apparently, they have some vested financial interest in not sending you outside their practice, as getting approval was a battle but finally the request was approved.
Doctor “Dolly” prescribed new meds and “films” of my spine. There was some deterioration in my cervical vertebrae and she felt sure she had located the problem. In the meantime the pain, which was mostly in my ears, continued to escalate. We tried more meds and lots of physical therapy. Although my neck’s range of motion increased the pain didn’t improve. In fact, during some of the initial therapy sessions, the therapist pulled on my neck similar to putting the neck in traction. Each time he did this, much like after the nerve block, about an hour later the pain went off the scale! He didn’t see the cause and effect relationship as clearly as I did but after I threatened to cut off certain parts of his male anatomy, he agreed not to pull on my neck anymore! After getting no success with the meds and physical therapy, Doctor “Dolly” sent me to see the best of the best of neck Surgeons at UCLA. He and one of his associates met me, listened to my complaint, viewed the films of my neck, and decided that the odds were that the deterioration in my neck was not the likely source of my pain and refused to operate (as it turns out this was a good decision!).
In addition, my brother (an Oromaxillofacial Surgeon) and I had done a lot of research and decided to relook at Eagle’s Syndrome (which had been ruled out earlier). There is a ligament that runs from the base of the skull (styloid process) to the Adam’s Apple bone (hyoid bone). This ligament can become calcified and result in pain of the exact type that I was experiencing. Early films taken of my neck were misread and Eagle’s Syndrome had been ruled out. Later, after viewing the films again, the elongation of the styloid process’ was evident and we made the decision to “go in for the kill”. We found a doctor about three hours away that had been trained in the procedure and I scheduled an appointment. My brother went with me and assisted during the operation. We found that the two ligaments (one on each side of the neck) were completely calcified into bone and could have been responsible for the pain. The pain, however, did not abate. Back to square one. One thing that the doctor’s couldn’t understand was that I experienced pain in both ears but the pain in the left ear was worse. Both of my stylo-hyoid ligaments were calcified into solid bone!
Back to square one! AGAIN. So, my brother asked around and found that a really good pain specialist was at Cedars Sinai, the hospital of the “stars”. So off to Cedars Sinai! We tried more meds (the most memorable being an antidepressant that could cause unpredictable, explosive, bowel movements with only a few nanoseconds warning). I had a few “accidents” while using that med. Not pretty or pleasantly fragrant! After lots of neck exercises, meds, cold sprays, and epidural injections the “famous doctor” dismissed me with” tell me what your next doctor thinks!” The one good thing out of being treated at Cedars Sinai was that they insisted on a psychological exam by a psychologist that specialized in the psychology of pain. As part of this process I was required to take an exam (Minnesota Multi Phasic Personality Inventory or MMPI) which is the “gold standard” for identifying personality disorders. I was given a “clean bill of health”, psychologically at least!
About this time, someone called me and told me a TV show or report about a doctor at UCLA that was using MRI Machines to image nerves. As we now believed this was a problem with nerves I called the television station and learned the name of the doctor. He was Dr. Aaron Filler. His name sounded familiar and I looked at my records and it turned out he had been the “associate” of Dr. Patrick Johnson (the best of the best of neck surgeons that I had seen at UCLA earlier). Dr. Filler pioneered the use of MRIs to examine nerves and is probably about the most knowledgeable doctor in the world in the technique. So, I made an appointment with him and we embarked on a long series of MRIs, injections, and three operations. Part of the problem, although we didn’t realize it at the time, is that the pain is very unpredictable. It would get worse and improve and then cycle again. This made the diagnosis difficult as what were “triggers” one day, weren’t the next. In addition, I began using pain killers and I’m now sure that they made diagnosing the pain, when it was being masked by the pain killers, even more difficult. Another factor that we are now aware of is that current research has proven that the “placebo effect” is real and does, in fact, reduce pain. So, when we did something than I expected to make the pain go away, it did! But it always returned. I wasn’t sure I wasn’t CRAZY! Another fact that made things more complicated was that I was experiencing pain in both ears, not just one or the other. All of the “literature” states that the conditions we suspected were causing my pain affected just one side or the other, not both! So, Dr. Filler did a number of nerve blocks, guided in real time by an MRI, and we seemed to reduce the pain as a result of the injections around the Glossophyarangeal nerves on both sides of my neck. In addition Dr. Filler was able to image the nerves and noted that they didn’t follow the “usual path” as they ran up the neck. So, an MRI room was cleaned up and I was the first person in the Universe to undergo surgery using an MRI machine (and the doctor’s thumb) to guide the operation. All together Dr. Filler operated on my neck three times. Once on the left nerve, a second time on the left nerve when scar tissue formed on the nerve and caused the pain to go off the scale, and a third time on the right nerve. The “placebo effect” kicked in and I seemed better for time but eventually the pain returned worse than ever.
Another factor that made my condition difficult to diagnose is that my pain became constant, not episodic. All the literature at the time said that neuralgias cause sharp, lancing pain and then it passes. Now, 20 years after I started complaining, there are two types of neuralgias that are recognized. Type one neuralgias are the sharp, lancing types. Type two neuralgias (the type that I have) produce pain that is always present to one degree or another. Now they tell me (what I’d been telling them all along!).
As I was beginning to have more trigger points and also pain in more than just my ears we (the doctors, my brother, and I) believed that it was now a central problem (meaning the BRAIN) not a problem with the nerves peripherally, or, outside the brain. More research and we learned that the “gold standard” operation for this type of pain is called a Microvascular Decompression. During the procedure, a hole is ground through the thickest part of the skull (behind the ear) allowing access to a number of the 12 cranial nerves (nerves on each side of the brain that don’t exit the brain via the spine but through openings called foramens). The surgeon then uses a microscope to view the nerves and blood vessels and then tries to “fix” problems by separating them and inserting shredded Teflon to prevent nerves and blood vessels from rubbing against one another. The hole in the skull is then covered with wire mesh and filled with bone dust and medical grade “bondo” filler. We made an appointment with a doctor at USC who was trained in the procedure. He listened to my story and agreed that it sounded like the procedure might help me and we should consider it. He was willing to do it for me, but he felt that the pioneer of the procedure, Dr. Peter Jannetta (who developed the procedure at UCLA but had moved to the University of Pittsburgh) was really the one to see and have perform the procedure. So, my brother, my wife, and I were off to Pittsburgh! We met with Dr. Jannetta and his staff, he agreed I was a good candidate for the procedure, and I was scheduled for it later in the week. Contrary to popular belief, brain surgery can hurt, a lot!!! It took me months to recover from the procedure and this time even the placebo effect wasn’t enough to help! In fact, I had a follow up visit with my family doctor (a new one as the last group had made it clear that I was “persona non grata” as I hadn’t gotten better even with all of their “expert” help!) and after arriving at his office, the pain caused me to vomit into the little sink in the examining room. He looked in on me before our appointment just after I had finished cleaning up (I was too embarrassed to let him know what had happened) to say hi! When he came back for our appointment he noted that I looked better as when he had popped in to say hi I was a bit gray! Only years later did I tell him the truth! Anyway, after six months, I wasn’t better and the decision was made to return to Pittsburgh and repeat the surgery. When I and my entourage arrived, Dr. Jannetta had second thoughts (he’d done his best the first time around and didn’t think he could do any better the second time) and he sent me to a hand surgeon, Dr. Ake Nystrom (from Sweden no less!). Dr. Nystrom listened to my saga and asked me to take off my shirt. He then stuck a needle in my left shoulder (it could have been the right, I don’t remember exactly). Anyway, the ear on that side EXPLODED in pain!!!!!!! He reflected for a moment and stuck a needle in the other shoulder. The other ear exploded in pain!!!! Apparently Dr. Nystrom knew something others weren’t aware of! So, off to surgery again to make sure there wasn’t something wrong with the nerve (called the Accessory Nerve-or 11th Cranial Nerve). Only as Dr. Nystrom began cutting did I learn that he hadn’t planned on using any anesthesia for the procedure. I now know that he’s well known for this technique as it allows the patient to inform him when he’s reached the nerve. When he used his “medical grade electric cattle prod” to locate the nerve, I let him know he’d found it. IN NO UNCERTAIN TERMS! He finished his work and sewed me up. After the procedure Dr. Nystrom and my wife had lunch together. He expressed his thought that I must be in a lot of pain as aside from letting him know he’d found the nerve, I hadn’t moved or said a word all time he’d been cutting on my shoulder! We returned home to Los Angeles (close enough) where recovery was rapid and again the “placebo effect” kicked in and I seemed to improve. I returned to Pittsburgh a third time and we did the other shoulder (he cut me some slack and used anesthesia this time). Again the placebo effect kicked in but as it always does, it wore off and again the pain returned worse than ever. The trips to Pittsburg were during 1999 and 2000 so it took nearly ten years up to this point. I later learned, when I attended a medical conference in San Diego on my “disease”, that if the problem continues for 5 to 8 years before being treated, the pain causes permanent changes in the brain and it is unlikely that any treatment will help (short of narcotic pain killers). Due to the pain, I was totally missing out on my boys growing up. I was able to make only a few trips with them as they went from Cub Scout to Eagle Scout and there was more than a little strife in our family due to my constant pain and the toll it was taking.
Somewhere along the line, I stopped by my brother’s office as I happened to be in the area attending a meeting, and the next thing I knew I was on his operating table and he and his partner were filing down the sharp edges of my lower jaw. He’d heard that the nerves could be pinched here and could be causing my symptoms. I could feel the rasping of the file but felt no pain during the procedure. The placebo effect never materialized this time and I continued to worsen.
So now I’ve been through eight surgeries, three trips to Pittsburgh, and all over Southern California and the major teaching Universities, and I was no better than when we started. The only permanent effect was that I’d lost most of the hearing in my left ear as a result of the “brain surgery”. I remember the hearing technician conducting the post surgical hearing test being frustrated with me as I wasn’t pressing the buttons at the same sound levels as I had during the pre op test. I told him I wasn’t hearing the tones, and perhaps that’s why they test your hearing before and after the operation. I think he missed my point!
So, my family Doctor sent me to another pain specialist and we tried implanting electrodes in my neck and spine (to try and overwhelm the nerves and stop the pain). Two more operations and no positive results. We then tried a shunt into my spinal column and injecting various meds over the course of a week to no avail (another failed surgery). I now realize, that I was on so much pain medication by this point, these trials were not valid as even though I stopped the pain meds during the trial, the pain killer I was using has a very long halflife (Methadone) and this most likely rendered the trial useless. After we exhausted his “bag of tricks” he said to me “you are a tough man, I know these procedures hurt and that we’ve hurt you, but you’ve never said a word”. What he had done to me was nothing compared to one of my “bad days”.
We also tried IV Lidocaine (which helped but only for an hour or so), nitrous oxide (again which helped but only while I was breathing it) but nothing helped for long.
By now we recognized that based upon the trigger points I have and where I feel the pain that 5 of the 12 cranial nerves are involved bilaterally (both sides of the brain). The odds of all of these nerves being problematic in one person are astronomical, thus proving “beyond a reasonable doubt” that I am SPECIAL.
As the pain worsened it was impractical for me to drive to work any longer as driving is one of the triggers for the pain. I then worked from home for three years before even that wasn’t practical any longer. It was then that I went out on disability (2002). It appeared that we had pretty much exhausted all of the options (yes I tried acupuncture and hypnosis). I then went to the Chief of Orofacial Pain at UCLA who diagnosed me with Trigeminal Neuralgia (5th Cranial Nerve), in addition to Glossophyarangeal Neuralgia (9th Cranial Nerve), Geniculate Neuralgia (7th Cranial Nerve), Accessory Nerve Neuralgia (11th Cranial Nerve), and Neuralgia of the 8th (hearing) nerve. Based upon the multiple trigger points involved, where I experience the pain, and the noise in my “ears” that is constantly present now, we can say conclusively that the 5th, 7th, 8th, 9th, and 11th cranial nerves are involved. This is simply unheard of.
This is really only a summary of what I’ve been through. Eleven surgeries (not including the emergency appendectomy), hours and hours of being probed, prodded, injected and scanned, and I’ve traveled all over Southern California to all the major teaching hospitals and to Pittsburg three times. I’ve been diagnosed with “Munchausen’s Syndrome”, “Tourette’s Syndrome”, and other psychogenic illnesses just because I’ve never responded to any treatment although it is well known that this type of pain is difficult to treat and often doesn’t respond at all to any treatment. A handful of doctor’s have “told me off” when I didn’t respond to their treatments. My marriage has suffered, I missed out on being the father I wanted to be, and my life has been a living hell.
Shortly after going out on disability, I tapered off and stopped taking pain killers as the side effects were intolerable. I then became anxious and depressed (common and expected side effects of detox) and after I STOPPED ON MY OWN, ended up in the insane asylums for about 4 weeks. I was told that no one could stop taking that much medication without help but I did! I was mistreated with 17 Electroconvulsive Shock Treatments and was told I’d be on antidepressant meds the rest of my life.
Wanting a definitive answer to “am I crazy”, after getting out of the hospital, I returned to Cedars Sinai and saw Dr. John Reeves the head of Pain Psychology at C.S. and UCLA and a past President of the American Pain Society. After another through evaluation including another MMPI, I was “cleared of being crazy”. In fact, some of the indicators for chronic pain focus on the MMPI should have been off the chart based upon what I’ve been through, but were only “mildly elevated and not statistically significant” indicating that I’ve adjusted remarkably well to the constant pain. I was also told at about the same time that the 17 ECTs were “arguably malpractice”.
Since then the only treatment I’ve tried is some new antidepressants that seem to be effective with chronic pain (the same neurotransmitters are involved with chronic pain as depression) and some neurofeedback training. It has been recognized that chronic pain changes the neuropathways in the brain and causes a form of “brain damage”. In February 2008 Northwestern University released a study of patients with chronic back pain and identified unusual patterns of brain activity. During the neurofeedback training we were able to see the exact same patterns of unusual actively in my brain but using an EEG machine to monitor brain waves versus the MRIs used at Northwestern. This is about as close as you can get to “measuring pain” objectively. Based upon my brain waves, I’m in lots of pain. All the time. One problem is that due to my constitution, upbringing, and training, I don’t show my pain. It is impossible to look at me and tell if I am in pain or not! Only the “brain waves” “know for sure”.
I continue to receive occasional “counseling” to help me cope with the pain and the personality changes it has caused and I am “trialing” new antidepressant to see if it can help with the pain and the occasional depression brought on by the pain. My pain specialist has offered me virtually any narcotics I want but I currently do not want to return to them due to the severe side effects of using them. One unique aspect of the “neuropathic pain” pain that I experience is that one is able to sleep. It doesn’t prevent one from sleeping like some other forms of pain. In addition, as I mentioned earlier, I’ve learned that after you’ve had the problem for five to eight years, the “wiring changes” in the brain are permanent and are unlikely to be reversed even if the cause of the pain is fixed. I was probably beyond help by the time I recognized I had a problem.
I manage the pain by limiting activities that are known to trigger the pain, and when I’m sensitive I stop and do very little. I accomplish about 10-20% of what I used to be capable of. I still, however, get out some and enjoy being alive. I’ve just given up a lot of activities just to be able to survive.
So, if you think that your “disability is well documented and no insurance company or administrator would deny your claim”, think again. I have been seen and treated by the “best of the best”. My condition is irrefutable. The Social Security Administration approved my first application without even blinking which is very unusual. Sedgwick CMS and AT&T, however were unconvinced and ultimately denied my benefits.
If you have questions email me at eamarquardt@sbcglobal.net
Cheers,
Gus
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