Identifying and Living with Arachnoiditis

What is that ? Arachnoiditis is not a fondness for spiders. It is a debilitating disease for those several thousand in the world who have been diagnosed with it. Many times it goes undetected because most doctors are unfamiliar with it. It is not a life threatening disease so is not a widely studied one. Arachnoiditis is inflammation of the arachnoid or middle layer of the spinal cord. The name comes from the spider web of scarring from this inflammation. According to Dr. Sarah Smith the inflammation causes constant irritation, scarring and binding of the nerve roots and blood vessels. It is characterized by severe stinging and burning pain and neurological problems. It also causes tingling, numbness, or weakness in the legs, feeling like insects are crawling on the skin or water trickling down the leg, severe shooting pains, muscle cramps, spasms and uncontrollable twitching, bladder, bowel and/ or sexual dysfunction.

If the disease progresses, symptoms may become more severe or even permanent. The disease can become very debilitating as the pain is constant and intractable. Most people who have arachnoiditis are unable to work which in most cases causes isolation that leads to depression. There are three main causes of this disease. The first is trauma which is surgically induced by way of surgeries which invade the spinal cord or trauma to the spine. Others are multiple lumber punctures such as epidurals, advanced spinal stenosis or chronic degenerative disc disease. The second is chemically induced by way of mylograms which use various chemicals that are injected into the spinal cord for contrast for tests such as CT or MRI scans. The third cause is infection induced. This can be caused by infections such as viral and fungal meningitis or tuberculosis.

There is no cure for arachnoiditis. Treatments are given to help with pain relief and are similar to other chronic pain treatments.

My arachnoiditis was initially caused by 4 spinal cord surgeries due to a car accident. These surgeries were done to keep me from being paralyzed from the waist down. I also have a shunt at the lumbar level of the spinal cord which affects my every move. As I have scar tissue attached to the shunt and nerves (arachnoiditis) my every movement causes pain. I used to wish that I was paralyzed as I mistakenly believed that paralysis means no pain. I found out that is not true.

A typical day in the life of this arachnoiditis patient begins with waking up in pain. On a scale of 1 – 10 my pain levels stay at 7-8. The first thing I do upon getting up for the day is to take pain meds. I move from the bed to the recliner with help. Both legs are very weak. I usually doze in the recliner for a couple of hours before trying to get up and do something. It takes me 30 minutes to make toast and tea for breakfast. I then take my morning medications. A shower and getting dressed take the next hour. I’m ready for my day usually about noon. If I’m having a good day, I may quilt, read & write emails. Walking short distances are painful but I make myself do it to keep some mobility. I usually fix lunch around 1 pm and take more medication. My meals are usually microwave dinners as that is all the stamina I have to expend. Every chair I sit in has a pillow to sit on and an air pillow behind my back. This is the only way I can sew or use my computer. I drive only occasionally as I risk being stopped by the police and being given a DUI when driving while taking any of the medications I am on. I take a time released morphine, darvocet, and neurontin for pain. Due to the side effects, I also must take heart medication,laxatives,herbal remedies for relaxtion and muscle relaxers. I’m usually alone during the day. When my caregiver gets home from work, I sometimes make dinner if I’m having a good day. Many times I can only get it started and he has to finish it. After dinner, I watch TV from my recliner and then move to the bed around 8 PM. I take my pain meds at 7:30 pm. This gives them time to get into my system so I can get about 4 hours of sleep. I have a TV in my room and I either watch it or read until the shooting pains stop enough for me to fall asleep which is usually around midnight. I sleep about 4 hours and then it starts all over again. There is not much quality of life for an arachnoiditis sufferer. It takes a lot of energy to find new ways to live life.

My life as I knew it is over. Most of my friends have abandoned me except for a couple who stay in touch by phone. I was an active outdoor and wildlife photographer who rode her own motorcycle. I traveled all over the United States and was very active in a camping club for singles since I became a widow 16 months after my last surgery. I have had to recreate my dreams and goals for life.

I now spend most of my time in a wheel chair to get around. I can no longer ride a motorcycle nor travel by myself. The hiking and kneeling and bending required to do my photography I can no longer do. The arachnoiditis affects my bowels, bladder, and sexual function. Pain has become my life.

I’m one of the fortunate arachnoiditis sufferers. I have insurance that pays my medical bills. I own my home that no one can take away from me. I don’t have to fight to get Social Security Disability. I have income from sources other than employment. There are others who are not so fortunate. They lose their jobs, their homes and their dignity. Their families do not understand this disease and don’t understand why they can’t still do the things they did before. To an outsider, a person with arachnoiditis looks normal.

For myself and many others, there is an online support group called COFWA( Circle of Friends with Arachnoiditis). Here we can complain, compare notes and vent our frustrations with doctors, caregivers, and family. We share happy events, pictures, and suggestions of how to cope with this disease.

For all of us with arachnoiditis , our hope lies in stem cell research and finding doctors who will take our disease seriously and want to find a cure. Dr. Sarah Smith of Great Britain is the only doctor who has researched this disease as she is also a sufferer.