Classical Arachnoiditis by David

On January 12, 1983, I went for my usual after-work run. It was cold & icy, so I only ran 2 miles. Besides, I was feeling a little sore & my back hurt a little. Having had a ruptured disc & surgery seven years earlier (1976), I knew when to ease up on my running. The following morning, when the alarm went off at 5 AM to get up for work, I felt as if I'd been struck by lightening. I literally could not move, stand, or walk. The pain was so intense that it caused me "see white" and feel as if I would pass out. I dared not even try to breathe.

OK, so far my story is not unlike that of many other back-pain sufferers. And, unfortunately, neither is what has happened since that painful day.

* Over the next seven years, I had many conservative attempts to lessen my pain (traction, chiropractic, acupuncture, bed-rest, physical therapy, and oral medications). No help here.

* Then we moved on to more aggressive treatments to calm down the irritated nerves (epidural steroid injections...lots of them...spinal blocks, caudal canal infusions). Still no help.

* Lots of tests, just to see the exact problem (myelograms, CT scans, bones scans, EMGs, MRIs, & plain old X-Rays). Success! Now we can see the problem and fix it!

* Surgery, surgery, more surgery, (Laminectomy, discectomy, posterior fusions, remove the fusion overgrowth, anterior fusion, and on and on). I won't try to compete with the "most surgeries" contest, but I would certainly be close to the top of the list! After each surgical "cure," the pain always returned, worse than before.

* Then came the bacterial meningitis, and that sure did not improve my overall health.

Finally, I found a doctor who was starting something new, called a Chronic Pain Treatment Program. The Medical Director was a neurosurgeon. I had always had orthopedic surgeons for my surgery. Now, I learned there was a difference!

NOTE: Both neuro and orthopedic surgeons are trained to do spinal surgery. Their training is similar.

BUT, their "orientation" is significantly different. The ortho may look at the structure of the spine & consider what needs to "be fixed." The neuro, on the other hand, tends to focus on the spinal impact upon the spinal cord.

Similar...but not the same. I wish I had known this earlier.

This Pain Treatment Center and the neurosurgeon director, literally saved my life. Their comprehensive evaluation of my pain lead to the diagnosis of a condition that almost made me laugh when I heard it ... Arachnoiditis.

But, what did not make me laugh was the fact that this is considered a spinal cord injury.

* Arachnoiditis is permanent and may be progressive.

* No one could tell me what would happen next with the condition, or even if it would worsen.

* Just that I should expect to have pain for the rest of my life.

* No, there was no cure.

* And, no, there was no surgical intervention that could help.

* In fact, any additions intrusion into the spine would only aggravate the condition.

NOTE: Even if a Pain Treatment Center is not available to you, it is vital to obtain a multi-disciplinary evaluation of your pain. Minimally, this should include a neurosurgeon, physical/occupational therapists, neurologist, and psychologist.

Maybe because I was so motivated to be well, to be the world's best patient, to work the hardest to recover ... and because I had no pending workman's comp. or other legal action pending, my doctor was motivated to "find something" to help me. In 1988, he attended obscure Pain Management Conferences to learn what was new in the field ... for non-terminally ill patients with chronic & excruciating pain. There he learned about the Medtronics Company and their new Neurostimulator Implant. Sort of an internal TENS unit. Sure, I was willing to give it a try! Unfortunately, they had difficulty placing the electrical leads in the correct spinal space because of the scarring. And all post-surgical attempts to "get it to work" were unsuccessful.

The next year was filled with fighting a mysterious post-meningitis infection that caused my back to swell & burst open, and remain open and draining for over six months. Finally, on the 4th surgical attempt to locate the source of the infection, my devoted neurosurgeon located it dangerously close to a nerve root, and at risk of causing the meningitis to return.

Now considered my friend as well as doctor, my neurosurgeon informed me of a new device being tested for use with non-terminally ill patients. In 1990, he had obtained permission to participate in the FDA trial of the new Internal Infusion Morphine Pump, and would I be interested? "How quickly can we do it?" was all I wanted to know. But there was more to know, lots of it. And, many uncertainties. It would not be an easy ride, but was I willing to try it? After all, what did I have to lose?

It is now the year 2000. The battery in my first Pump stopped in 1996, and my second Pump was implanted. Along with the help from the Chronic Pain Treatment Center staff, this device has given me the ability to live, with the excruciating pain hidden somewhere in my subconscious. Yes, I still have pain. Yes, sometimes it is quite severe. The doses of morphine have been steadily increased over the past 10 years. Multiple oral medications have been added to my daily pain management routine. However, I am able to find quality in my daily life. Something that would not be true if it were not for the pain-relieving abilities of morphine.

The other significant aspect of my life with Arachnoiditis is that it has continued to progressively worsen. Beginning in 1997, my walking became unstable & I often stumbled and fell. Progressively, I was becoming paralyzed. Over a one-year period of time, I required the use of a cane, a walker, and now a wheelchair. I am able to stiff-legged stumble a few steps, but that is the extent of my ability to walk.

The paralysis, caused by intense & progressive Adhesive Arachnoiditis, has impeded the affected nerves from operating as intended. As a result, I also cope with many of the other related symptoms of arachnoiditis. Only continued pain management is available as a treatment. But, that I can accept. I can learn to cope with almost anything, except unrelenting excruciating pain.

Classic Arachnoiditis? Why did I choose this title for my story? Because, as I have learned from the caring support and information from ASAMS, I am not alone.

* The spinal cord injury resulted from several factors, including excessive surgery, toxic medications, meningitis, and the tendency to "grow" scar tissue at a very rapid rate.

* The injury was aggravated from multiple spinal insults, not a single event.

* Well-intended, but uninformed doctors contributed to the injury through their treatments.

* I finally received a proper diagnosis and treatment when I was fortunate enough to encounter a doctor who listened to my pain, and cared about me as an individual.

* The progression of the disease, including potential for paralysis, differs in each person.

* Arachnoiditis is a "full-impact disease" as it has the potential to affect the person with multi-system difficulties, not "just" pain.

That's my story, from the medical point of view. As you might suspect, Arachnoiditis has impacted all aspects of my life, not only my health. And, although my experience may be a bit more severe than many, this is a disease that affects the entire family. Chronic pain is inescapable. And, until a person is unable to walk, it may also be "invisible" to others. Coping with Arachnoiditis cannot occur without effective treatment. Despite my physical limitations, I consider myself fortunate. Fortunate to have gained the information and support I need in order to obtain appropriate treatment, and learn how to cope.

And that is why I have written "My History" in this manner. Because, at this point in my experience, Life is more about Helping Others, than talking about myself.