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WHAT IS IT? Arachnoiditis is a degenerative condition characterized by chronic inflammation of the arachnoid matter, the middle of the three membranes which cover and protect the brain and spinal cord. The membranes covering the nerve roots become thickened and scarred. This forms fibrous bands which cannot be eradicated. Fibrocytes form causing the pia and dura matter to adhere to one another, filling the arachnoid space. Globules of oily iodine medium are frequently entangled in this dense scar tissue. Dural pulse is absent. The nerve roots, enmeshed in scar tissue, hypovasculate and become progressively atrophic. Repetitive micro trauma occurs. Cysts containing spinal fluid or oil based contrast may form. Other complications may occur. IT IS LITTLE UNDERSTOOD BY A VAST MAJORITY OF MEDICAL PROFESSIONALS. In many cases the unfortunate victim is called a malingerer with exaggerated or low pain tolerance
For a really good site with lots of information on Arachnoiditis check out; Arachnoiditis Sufferers Action and Monitoring Society (ASAMS) New Zealand Inc.. CAUSES: Arachnoiditis may develop up to several years after an episode of meningitis (infection of the meninges or membranes) or sub arachnoid hemorrhage (bleeding beneath the arachnoid). It may be a feature of diseases and disorders such as syphilis or ankylosing spondylitis, or may result from trauma. Some symptoms can develop immediately after an episode of damage, but may not appear for a very long period of time - up to twenty years or more. Water soluble agents containing ionic iodine (see contrast) are also capable of causing arachnoiditis. In addition to the physical discomfort, people have to adjust to the psychological, social, economic and emotional effects caused by the disease.> CONTRAST FLUID: Until the late 1980's, oil based contrast (Pantopaque) was being used for 350, 000 to 450,000 myelograms a year, and was still being used in 1991. It was banned in Sweden in 1948 when its role in causing adhesive arachnoiditis was identified. The water based contrast medium metrizamide (Amipaque) is a non-ionic solution of iodine that is safer than most other materials, but is not completely risk free. The medical profession should not feel confident in claims of non toxicity, and evidence of arachnoiditis must be sought for by follow-up for many years. Since many years may elapse between the causative incident and the appearance of unusual symptoms, follow-up may be difficult. Stinging and burning symptoms may develop immediately or there may be a delay of up to twenty years; perhaps until another episode of damage. If you have had a myelogram and you have chronic back pain and related problems, you may have arachnoiditis. DESCRIPTIVE TERMS: Some of the terms used to describe the disease are:
Evidence of oil based contrast may be present in your X rays. Terms such as "oil based contrast," "contrast present," or "previous Pantopaque myelogram evident" may be mentioned in your records. SYMPTOMS: The signs and symptoms vary with the extent of the disease. It may cause headaches, epileptic seizures, blindness, or slowly progressive spastic paralysis (due to increased muscle tension) affecting one or more limbs. There may be bladder, bowel, thyroid and sexual dysfunction. Some Symptoms of Arachnoiditis are:
You may have some of these symptoms, if you are really unlucky you may have all of them, and of course this is not a complete list, there are others. WHAT IT DOES: With lumbar arachnoiditis every electrical impulse that travels up the nerves from any point below the damaged area in the back goes through the inflamed nerves in the cauda equina or nerve root ganglion and becomes interpreted as a pain signal. As there is no end to the electrical impulses, there is no end to the pain sensations. The more activity means the more electrical impulses. There is almost no limit to the pain you can create. This is not something that can be worked through like some angina situations, there is no pain barrier you can go through. Eventually the patients nerves fail and all muscles will develop strong tremors, myoclonic jerks and unusual sensations, allodynia etc. These are symptoms of patients going beyond their newly limited abilities. TREATMENT: The pain is difficult to treat, so it is important that you find a knowledgeable, caring and compassionate doctor(s). Physiotherapy adds fuel to the fire if it involves any point lower than the scar tissue or movement that affects the limbs involved. More activity means more electrical impulses hence more pain. For most patients nothing short of MS Contin (morphine) or Duragesic patches proves adequate for pain relief. Since this is a mechanically induced problem; (irritation of the nerve tissue caused by activity), increased activity will lead in increased irritation/inflammation which will rapidly, usually within minutes, overpower the pain reduction effect of the medication. Addiction is defined in terms of problems of withdrawal. Pain patients systems use narcotics different than other people and they will need it for life Pain: a; a basic bodily sensation induced by a noxious stimulus, received by naked nerve endings, characterized by physical discomfort and typically leading to evasive action. b: acute mental or emotional distress or suffering: .......
Pain is subjective not objective. PAIN KILLERS: At present I take 200mg of a long acting analgesic daily to control the pains to a degree. I also have to take; as needed for breakthrough pain; up to 20mg of a fast acting analgesic that take from 10 to 25 minutes to act on the pain. The impression that taking these analgesic cause a person to be blitzed or in a high all the time is not true for patients with Arachnoiditis. Also the assumption that people on analgesics can't function in any capacity, and have to rely on others to be constantly be watching out for them is not true for patients with Arachnoiditis. Morphine does not eliminate pain, it decreases it enough for a person to be able to do a few things and have some kind of life. PAIN MANAGEMENT: I do mental exercises, a modified form of Ti Chi and stretching exercises for my legs and back. I have some good days but a lot of not so good days. It is very difficult do any one thing for any length of time. I have to keep changing positions and I also have to rest a lot. Being in constant pain uses up a lot of energy. It is very difficult to explain to anyone what it is like to be in constant pain. And why no one wants to hire some one who can work for maybe a couple of hours one day and then be unable to even drag himself around the house the next day. HISTORY: I am a Licensed Journeyman Automotive and Heavy Duty Mechanic. In 1974 I was working for a large automotive and truck dealership. Three other Heavy Duty Mechanics and myself had informed the shop foreman, and later the management of the dealership, that the large transmission jack was in an unsafe condition. We asked if they would replace it or have it repaired. We were made aware of the fact that there were a lot of other places to work. THE ACCIDENT: On November 28, 1974 I was reinstalling a thirteen speed Fuller road ranger transmission, which I had finished overhauling, into a Ford 9000 snub nose tractor. That particular transmission weighed around the 300. I had positioned it on the jack rails and platform. I had attached chains to it to make it as secure as possible and positioned the jack and transmission underneath the truck. I Crawled underneath the truck on my creeper and started to install the transmission. There was very little room underneath for me and the jack which holding the transmission elevated three feet from the floor. The input shaft of the transmission was into the clutch plate. I was on my knees on the floor with my lumbar spine, L3 and L4, pressed against the frame rail. I was just moving the jack and transmission forward into the clutch assembly when the jack failed completely. The precariously balanced transmission slid off of the jack base, the input shaft came out of the clutch, the chains, broken jack rails, support plate, and the transmission came to sudden jarring halt against my abdomen and hips, squeezing me between it and frame rail. I heard a loud crack, felt quite a lot of pain and my legs felt strange. I yelled for help. Several mechanics came to my assistance and managed to extricate me from the area. MYELOGRAM: By January of 1975, I was barely able to walk, one leg completely dead the other had a lot of severe constant pain. I Went into the hospital and had a "Myelogram" the technicians used "Pantopaque" contrast medium. The Myelogram failed and they left an amount of the iodine in my spine. SURGERY: In March of 1975 I had surgery to remove broken pieces of vertebra and to repair two severed nerves. Recuperation and lots of physiotherapy. Went back to work in August of 1975. FIRST PAINS: I began having pain in my left leg late in 1979 and early 1980. My health started to degenerate. I started having blackouts, and decreased motor control in both legs. I began having severe burning type pains in my left and right thighs along with constant pains in lower back from right to left hip MORE PAIN: As the years rolled by I experienced constant pains in my right abdomen and groin as well as right buttock, down back of right leg and into right heel. There was also a lot of burning type of sensation along the outside of my left thigh from my hip to the knee. Severe pains in left chest and down left arm into the wrist and hand, double and blurred vision. Due to severity of the pain associated with some of these problems I had to rely on stronger and stronger pain killers to get me through a day. FIRST DIAGNOSIS: I had various specialists diagnose me from, occupationally induced temporal lobe epilepsy to occupationally induced asthma. I was treated for Manic Depression and was told by one psychiatrist that I was imagining all of my problems. I had dozens of tests and underwent many different treatments until I was seriously considering suicide. Finally my family doctor convinced the neurosurgeon who did my original surgery that I was experiencing some unusual conditions. She said that I was demonstrating some symptoms of a condition called, "Lumbar Arachnoiditis" but the only way to find out was to have another round of tests. TESTS: I have had EEG's, sleep deprived EEG's, EKG's, spinal taps, Lumbar punctures, Brain Scans, and enough X rays to make me glow in the dark. I have also had Echo cardiograms, Ultra sounds, Stress and Pulmonary function tests. Every organ that I have has been checked tested and examined from Lung Scans, to Urological tests. I have also had very pleasant Nerve conduction tests, if you don't know what that is you really don't want to know. CT scans (lumbar, thoracic, and cervical) and MRI's. To top it all off a tasty drink of Radio Iodine for hyperthyroidism in May of 1995. NO MORE MECHANICS: By February of 1992 my health was so bad that I was unable to do any mechanical work. I had been rushed to the hospital three times after collapsing at work. After the last time the doctors and the City of Calgary's medical department refused to let me go back on the floor. After sitting at home until April of 1992 I was given a clerical job in the office at MSD to fill in for one of the ladies who was on maternity leave. When she came back I was told that they, management, liked what I was doing that they had a permanent position for me as a clerk doing warranty claims. Because the salary was only a half of what I was making as a mechanic I was put on long term disability light duties. My salary was topped up from a clerks to my mechanics wage. LAID OFF: I was laid off on April 7, 1994, it turned that the long term disability in my case was not so long term but only for 2 years. I had it explained to me that the reason for this was that I was considered to be partially employable but not as a mechanic. Also the City was cutting staff and down sizing the mechanical services department. Because I could no longer work as a mechanic and that I was the most junior clerk there was no place for me at the City of Calgary. CITY PENSION: I was given a package when I was laid off, 4 weeks holiday pay and 2 weeks of lieu days pay. I was told to apply for WCB disability and CPP disability. I had to fight with the City until September of 94 until they agreed to pay me a small disability pension and to back date it to my date of termination. It was incorporated as part of my retirement pension.
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