Patients' Stories

Shirley's Story

In 1974, at the age of 32, I had a fall which resulted in a slipped disk. I was in traction for 2 months and then in a plaster cast for 3 months. Over the next 2 years I had several bouts of traction, manipulations under anaesthaetic, and physiotherapy. Eventually, in 1976, because of weakness in the legs and severe pain the Orthopaedic Surgeon decided to do a myelogram. The first water-based dye, Dimer X, was used. This showed that the disc between L4/L5 was protruding into the spinal canal to the extent that it had almost blocked it completely.

A spinal fusion was done and I spent another 3 months in a plaster cast immediately after the operation. Unfortunately, I picked up an infection in the operating theatre, and due to poor post-operative care I developed a pressure sore at the base of my spine, which ate right down to the bone. This required daily cleaning and dressing by a group of volunteer nurses who visited me at my home for the next 2 months. The fusion, with bone taken from my hip, was successful, and I experienced relief for a period of about 2 years, after which I had recurring pain. My constant back problems eventually, in 1980, resulted in my husband divorcing me as he said my ill health had negatively affected his lifestyle. I had two children, a son and a daughter, who continued to live with me.

By 1982 I was experiencing increasing pain, and consulted an Orthopaedic Surgeon, who treated my condition very conservatively with traction and physiotherapy. One day, as I rose from the physiotherapist's table after ultrasound treatment, my legs just collapsed and I fell in a heap. The Orthopaedic Surgeon immediately decided on a myelogram, which showed a fibrous mass resembling a bird's nest at the base of the spinal cord. Neither the Radiologist nor the Orthopaedic Surgeon had ever seen anything like this before and had no idea what it was. After this myelogram I had the most excruciating headache, accompanied by such dizziness that I had to hold on to the headboard of the bed and the wall to stop the room from spinning.

Four days later I underwent surgery, during which the Surgeon did a Laminotomy and removed a "rope" of scar tissue that had entwined itself around the spinal cord, leaving deep indentations on the cord. The surgeon remarked at that time that he was amazed at my stoicism, and that he had had no idea of the extent of the pain I must have suffered. I experienced incredible relief after this operation and thought all my back problems were over. I continued to work and in 1984 I met and married a man who had three daughters of his own.

In 1985, three years after my second operation, I was playing tennis and after twisting and reaching for the ball I experienced excruciating pain which caused severe spasm in my back. The pain did not let up at all. Once again, I was treated conservatively with traction, and several steroid injections into the spine. Three months later the pain had not abated and I was referred to a Neurosurgeon. He ordered a CT Scan which showed that the spinal cord cavity was drastically reduced by bone growth in the L4/L5/S1 area, and he informed me that he would have to operate to scrape this out if I was to avoid severe lameness and bowel and bladder problems. However, as the Radiologist had reported clinical symptoms of Arachnoiditis, he needed to do a myelogram to confirm this.

The myelogram showed, beyond a doubt, severe arachnoiditis. The Neurosurgeon, after consulting with the Orthopaedic Surgeon who had operated on me in 1982, said there could be no question of operating. He advised me that there was no cure and I would just have to live with the pain, and recommended that I be admitted to hospital in his care every 2 to 3 months, when the pain became unbearable, for intensive medication and bedrest. Whilst I was hospitalised I was given very strong painkillers and was kept so heavily sedated that I was literally knocked out for a period of 2 - 3 weeks. This was to be the pattern of my life for the next 12 years - struggling to cope with painkillers which barely touched the pain, and eventually, when my whole body was in excruciating spasm and the pain too much to bear, spending a couple of weeks in hospital - and this occurred at least every 3 months.

In 1987 a Pain Clinic was established at the nearest large hospital, and in 1988 I attended once a month for a period of a year, during which time I was given Propoxyphene for pain, and Tofranil, but the main aspect of my treatment was psychotherapy.

About this time my family doctor took in a new partner, recently graduated from a University which was affiliated to one of the largest hospitals in the country, and he approached the Professor of Neurosurgery on my situation. This Professor offered to review my case and I spent a few days in this hospital where I had another myelogram and CT Scan. The Radiologist had great difficulty even inserting the needle into my spine and had to probe his way through the scar tissue. His attitude, once he had seen the films, was one of extreme compassion and gentleness as he requested several further views in varying positions. I then had the CT Scan, and again was struck by the alteration in their attitude to me once they had viewed my spine, and the care with which they lifted me on to a stretcher. The next morning the Professor, accompanied by his team, gently took my hand and told me that he and a team of 8 had sat half the night discussing my case and had eventually had to concede that there was nothing they could do for me, except pray. I was struck by the kindness and compassion shown me by this team, and the promise of their support, should I ever need it, or should any treatment be discovered.

A few years later my doctor recommended that I go to the Spinal Unit of another large hospital in our country, which I did. They did not even examine me as they said that there was absolutely nothing they could do for me. They did, however do a PET Scan to rule out the possiblity of cancer or an infection of the spine. It was again confirmed that I definitely did have very severe adhesive arachnoiditis, and they made an appointment for me at a Pain Clinic in Johannesburg, and mentioned a possibility of severing my spinal cord, the theory being that paralysis would be preferable to the degree of pain I suffered. Here providence stepped in as the hospital where this Pain Clinic was situated was closed when the staff went on strike at the time of my appointment, and as I had been told in the interim that there was no guarantee that I would not still suffer "phantom pain".

Shortly after this the Neurosurgeon who had originally diagnosed my arachnoiditis, phoned me out of the blue and told me that he had discussed my case at a National Conference of Neurosurgeons, and that they had all "freaked out". He said that absolutely nothing could be done for me, but should anything ever "come up", I would be the first to know.

For the few years after my original diagnosis I gradually became more and more lame and in 1989 I decided to use a wheelchair to get around beyond the confines of my home. My life had become more and more restricted and I felt that, even if only for the sake of sanity, I needed to be able to get back to doing normal things like shopping again. The members of the Pain Clinic were reluctant for me to use a wheelchair and arranged for me to undergo an EMG. The results of this were a surprise to everybody, including the Neurologists conducting the tests. I was walking without assistance, though with difficulty. This EMG proved conclusively that there was central motor nerve damage, though the extent of damage was not determined - the Neurologists conducting the test had stopped it after a short while because they felt that the severity of the pain which I was undergoing was too much - although I had not in fact complained at all!

I had a great deal of opposition from family, friends and the doctors. Over the years I had had to put up with scepticism, criticism and blatant ridicule. In 1990 my husband demanded a divorce and I was suddenly, at the age of 48, living on my own, my children having grown up. The group of doctors who had attended me for years openly called me a "drug addict" and refused to treat me. Medical Aid Societies refused membership and by this time my financial situation had deteriorated to such an extent that I could no longer afford to see the Neurosurgeon, and I had become a "State" patient, which meant that I had to be seen by whichever doctor was on duty at the local hospital. These doctors had been warned about me by the private doctors who had previously attended me, and therefore also refused to give me any strong drugs. An elderly private doctor eventually took pity on me and treated me free of charge whenever I had a flare-up. He undertook to hospitalise me and give me pethidine injections at six-hourly intervals for a couple of days when I could no longer cope, until the pain cycle was broken, and I was once again able to manage on milder painkillers. This gentleman's kindness to me restored my faith in humanity, and had it not been for him I believe I would have contemplated suicide many times. Obviously none of these doctors had any idea what arachnoiditis involved at that time.

I have attended the nearest Pain Clinic during all these years and have received my medication through them, but their policy has always been to treat pain very conservatively with no painkiller stronger than doxyphene being prescribed. In 1999 I was given a series of 3 caudal blocks at monthly intervals. These were excruciatingly painful and traumatic, to say the least, as the amount of scar tissue made it extremely difficult to insert the needle into the spinal cord. I felt that my pain increased considerably after these treatments, and my overall condition deteriorated. I experienced increasing bladder and bowel problems, weakness in my legs, and even pain in the upper part of my back, my shoulders, arms and neck. The Pain Management Team then decided to put me on morphine. In addition to this I take Neurontin, Tofranil and Baclofen.

In June 2000 I was given a computer and through the Internet I have been able to educate myself, my family and my friends, and the Pain Clinic Team to the point where it has made my life easier, and restored my credibility. In addition I have "met" many other sufferers of arachnoiditis who have helped to restore my self-confidence. The isolation and ridicule suffered during the first 15 years since my diagnosis has been as horrific as the pain and trauma of becoming disabled and having to adapt to a whole new way of life.

ASAMS is providing a wonderful and essential service in educating people, including the medical profession, about a little-known condition which has traumatised the lives of people all over the world.

SHIRLEY HARRY
June 2001
South Africa