At the age of 23 (1974), I had my whole life ahead of me, being a new bride, having graduated the year
before from a small town hospital, in nursing. Working as a nurse in Québec city, Canada, in a large hospital, on the orthopaedic floor, was a huge undertaking for a freshly graduated shy young woman, taking a leap into the big city .My eyes were filled with excitement. My future was bright, I was excited to the prospect of discovering new avenues.
I worked hard, having to take care of at least 30 patients from 4 to midnight. I enjoyed the challenges of taking care of ''my patients'' which most resulted from surgeries. Orthopaedy is a fascinating field mostly resulting from car accidents, personal and work injuries and congenital deformities. Little did I know that I would become a casualty as well. My life changed direction drastically and I never realized what I would be facing for the rest of my life - Chronic Pain.
It started very simply. I lifted a patient, with the help of another co-worker, an elderly who needed to be transferred from his bed to his lounge chair.
Bam! Sudden pain in my back! Carry on Louise, must not drop the patient on the floor - Once he was safely seated, I realized that something very important had just happened, I had a sudden pain in my back. It wasn't excruciating, but it was acute and it was telling me something was wrong.
I hesitated in filling the accident report because I was so busy, and thought:
Hum, I will be alright, it will go away.
Thankfully the nurse in charge convinced me about the importance of reporting such incident - One never knows, she said. She was right. The next few days I realized that something happened and that I needed to see an orthopedist. Well, I knew them all, working with them on a regular basis so I picked the best one.
X-rays and a myelogram were ordered at my first visit with the specialist and medications, to alleviate the pain plus anti-inflammatories. Those days, myelograms were performed with Ethiodan in Canada, a mixture of isomers used as contrast medium, mainly for brain and spinal cord visualization. Briefly Ethiodan (aka Myodil, Pantopaque) hangs around in the body so will still be detectable 40 years later although it can be in small droplets (usually encysted) or a thin film that resembles a fat layer. It was discovered that I had an anomaly therefore I was instructed to be hospitalized and endured to be strapped to weights (traction), stretching my spinal cord and possibly correcting the potential herniated disk that was developing at L5. After 10 days of torture, I underwent another myelogram to determine if it has resulted in allowing the spine to realign itself once again. Unfortunately it had aggravated, the pain was worse and the results from the myelogram showed there was a problem, a mass had developed. And so surgery was scheduled, a discectomy. It went well, painful, to say the least,
but hey! at 24 years old, the success rate is higher therefore I trusted that I would go back to work within 6 weeks, as it was predicted to me by the orthopedist and I would be as good as new! After resuming my work, having to lift patients would simply aggravate the injury over and over. Another myelogram was performed in order to determine if I had another herniated disk. More medications were prescribed and epidurals were ordered, a series of 3 were performed within the next few weeks. Depo medrol, Methylprednisolone is a synthetic (man-made) corticosteroid medication that has been developed to imitate the actions of naturally occurring corticosteroid hormones in the body. A particularly important action of methylprednisolone is to relieve inflammation that causes symptoms such as swelling, itching, and redness. The label indicated that it should not be used for intrathecal use. Unfortunately, physicians had ignored the warning. In the meantime, I had stopped working due to the constant pain. Work comp had taken over my care therefore I was instructed to undergo physical therapies, among one was exercises in a heated swimming pool.
My personal life was also falling apart. My marriage became undone in the process. I became depressed, and was prescribed anti-depressant, anti-anxiety reliever, pain killers, anti inflammatories among other things. Alcohol was a constant companion as well. In the 70s there were no obstacles in prescribing ‘‘pills’’. You simply complained and a prescription was given to you.
Between the ages of 25 to 27 I received 13 epidurals with Depo Medrol and 8 myelograms with Ethiodan.These epidurals were performed in the later part of the 70's. I spent a lifetime of suffering, I suffered from a depression that I call ''the abyss’’; my pain was physical, emotional, psychological and environmental. My pain was ignored, I was sent to see a psychiatrist because the neurologists, the orthopedist could not figure out the reason of the neuropathy. The psychiatrist did not detect my depression; his goal was to terminate my work comp benefits, first and foremost. I attempted suicide.
Yet, there was one neurologist who reported that I had Arachnoiditis, but that medical report was hidden from me, and was buried very deep in my ever growing medical file. I was ignored and left alone to deal with this debilitating pain.
I am now in my 60's, and still dealing with pain. I managed to reorient my career, I went back to school, I worked for 32 years until, finally, in 2004, chronic pain put me in a wheelchair. I could no longer function and live a normal life. I could no longer earn a decent living and hold my head high. I had spent 32 years dragging myself to work every day to finally come to the point that I could not go forward anymore. I was 54 years old then. I was told that my spine was like an 80 year old woman. I was told I had adhesive Arachnoiditis as per what the MRI indicated.
I have now reached the last stage of my life. This is 2012. I have seen and listened to so many young women and men who were maimed by these barbaric and invasive procedures. The sub-arachnoid space is the most pristine area of our body. Why on earth is this route used to administer all kinds of junk? Why would doctors tell their trusting patients that everything will be safe YET they have their patients sign a consent form, protecting the doctors from any lawsuits. Because they KNOW epidurals carry a high risk of maiming a patient for life and that they are dangerous.
There are thousands of people who have been diagnosed with adhesive Arachnoiditis, specifically around the world, who are suffering silently.
What do we want? Simple. Stop epidurals of any kind. Stop putting needles in people's back. Acknowledge the risks and the grave consequences of such invasive procedures. Validate adhesive Arachnoiditis consumers who are being ignored and are suffering silently. Provide proper research, treatments for chronic pain and help those who are depressed and in pain, to learn to cope with this man made medical error.
Today, I am fortunate to receive a treatment that alleviates my pain, Lidocaine infusion, not injection but an intravenous infusion of lidocaine administered with a bag of 250 ml of saline solution. An old treatment that was used way back in the 70's for arrhythmia, It was discovered that injecting lidocaine intravenously, interrupts the message to the brain from the damaged nerves, telling the brain that the injury is no longer a crisis, so to speak, therefore eliminating, decreasing the pain. The problem is that doctors say it is toxic, it does not work, it is dangerous. None of these statements are true if it is administered according to the formula, administered by an anesthesiologist. The real challenge is to find an anesthesiologist that will administer it and get paid very little, it is a cheap treatment. Lidocaine is available everywhere in North America, non-addictive and will allow to drop some of the narcotics and opioids that are taken because the pain has decreased. How do I know this? I have been the recipient of this treatment for 18 months as of now, my case is being written in order to be published in medical journals. The only way you will find out if you are a good candidate of lidocaine infusion is to have a trial done, a simple test of 2 minutes.
You can see what I can do in this video, taken this past February :http://youtu.be/-P64Tk5vYys
I am urging everyone to be vigilant and to become their Own Best Friend (OBF). Be your own advocate, educate yourself on what Arachnoiditis is, listen to others who have gone through numerous invasive procedures and are in constant pain. And then demand to be heard from your physicians, specialists, nothing less. I have one last word of advice: take your time before allowing more surgeries. Allow your body to heal, give it time, seek alternative therapies. You will be surprised how resilient your body is.
Louise Carbonneau Vermeiren, RN (Retired Nurse) & Artist@Heart
Facilitator - Self management program for chronic pain
Board member - Canadian Pain Coalition