Living with Pain: A Face from the War on Pain

Living with Pain: A Face from the War on Pain

In 2000, a heavy wind shear struck with no warning in downtown Los Angeles, hitting the single engine plane from which Radene Marie Cook was doing traffic reports for radio station KFWB.

Ms. Cook was alone with her pilot when their Cessna was swatted from the sky and into a nosedive. She vividly remembers the shocked faces of workers in a high rise building as their helpless plane plunged past them.

Radene Cook

Fortunately, the wind shear hit the ground ahead of the plane — forcing the plane’s nose up and allowing the shaken pilot and his passenger to fly back to the Van Nuys airport.

But in those terrifying seconds as the plane fell from the sky, Radene’s life changed forever as she slipped inexorably into the twilight of unimaginable pain and disability.

We’d be forgiven for thinking the pain gods would leave Radene alone after something so traumatizing. But we’d be wrong. They were just beginning with her.

Radene sustained damage to several discs in her spine that caused increasing pain. For five years she underwent the usual treatments for a spinal injury: over-the-counter pain relievers, physical therapy, massage and a lengthening list of physicians trying to reduce her burgeoning pain.

She also submitted to dozens of epidural steroid injections near her spine. In this procedure, a physician inserts a hypodermic needle into the space right next to the spinal cord and injects steroids or a local anesthetic. The margin of error for epidurals is small and, while complications are rare, it has resulted in many unfortunate cases of arachnoiditis.

Arachnoiditis is a neuropathic disease that — through surgery or other invasive procedures at or near the spine — can cause a tear or cut in the arachnoid layer of the spinal cord. In more serious cases, like that of Radene, the nerves are compressed and adhere in such a way that any movement on the patient’s part can tear the nerves, causing severe pain. Sometimes blood invades a rupture or tear in the arachnoid layer. This is disastrous — as blood acts as an inflammatory agent inside the spine.

This disease is chronic, horribly painful and disabling. It causes pain in the spine, down the legs and into the tops and bottoms of the feet.

Saying arachnoiditis is incurable and diabolical hardly gives this devil its due.

Some pain patients have been treated with success with a spinal cord stimulator. The battery powered device is surgically implanted in the hip, from which electrical leads are planted along the spine where the injury is located. The stimulator sends electrical signals to the brain that arrive milliseconds ahead of pain signals — turning the pain into a tingling sensation. I have found that this device reduces the pain for me to a semi-tolerable level. This, however, doesn’t come close to helping people Radene and others who suffer from severe adhesive arachnoiditis.

Radene Cook’s spine.

All this was compounded for her by ruined, leaking discs that were damaged in the plane crash. Her physicians wanted to fuse parts of her spine, but they had to wait for her spine to stabilize. But as many pain patients have sadly learned, treatment delayed is chronic pain incurred. The damage ruptured nerves in Radene’s spine, causing a snowballing effect that led to chronic pain.

Radene was bedridden as her body and its systems spiraled out of control. The pain was so severe that her body could no longer regulate its temperature, causing her to pass out repeatedly. Her central and sympathetic nervous systems were in disarray.

Additionally, she suffers from Chronic Regional Pain Syndrome (CRPS). CRPS causes pain in certain areas of the body that is often described as intense and searing. The cause so far is unknown, which leaves the patient in terrible pain.

By 2005, Radene was nearly dead. The spinal fusions had helped somewhat, but all the other treatments had failed, so she began a course of opioid analgesics.

“I was dying from so many pain signals,” Radene recalls, which is why the pain clinic she works with in southern California took such extreme measures to save her life. Her physician performed a genetic test and discovered that of the four pathways for opioids to help reduce her pain, only one was active. This meant that even though she was taking larger than average amounts of opioids, they weren’t effective with her pain. Thus, the 1400 milligrams she takes daily of oxycodone, OxyContin and fentanyl to turn back the pain.

“Extraordinary disease require extraordinary treatments,” says Radene about her opioid therapy.

At the clinic where Radene goes to for treatment there are about 120 patients like her on high dose opioid therapy. Patients come to this clinic from all over the country. As a result of her treatment there, she feels her health and pain levels have gotten better.

Radene and others like her are squarely in the crosshairs of those individuals and groups who have petitioned the FDA to limit non-cancer pain patients to a maximum daily dose equivalent to 100 mgs. of morphine and to cut them off after three months of opioid therapy.

It goes without saying; this would be a death sentence for patients like Radene who live in the extremities of pain. There are hundreds of thousands of pain patients like her who take over 100 milligrams of opioids a day. Restricting access to pain medications will most certainly raise the mortality rates among these patients.

According to a letter I received from Sen. Dianne Feinstein of California, the Obama administration is committed to protecting the public from the diversion of opioid medicines, while preserving the rights of pain patients to access to these life-saving medicines.

I urge everyone to contact the White House and demand that the administration hold to this position.

The other position is simply murder.

Mark Maginn

Mark Maginn lives in the east bay of San Francisco where he is a poet, writer and social justice activist. Mark suffers from chronic pain and was a longtime volunteer with the American Pain Foundation. His blog can be found here

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There are 2 comments for this article
  1. Donna Ratliff at 11:09 pm

    Thanks so much Mark for doing another great article. It’s wonderful Radene is lucky. She is getting great care. As usual your writing gets right to the point and exposes the truth.
    As for writing the White House, of course we all try doing this but rarely get a response. I will do that again once more and hope to hear back the right answers. I really hope that all these problems for pain patients stops soon. On the other hand,
    I have to be honest too. I don’t think that the white house really cares about pain patients because they surely have had time enough to hear the cries for help from many patients suffering right now. We are still suffering. At this point? I’m not sure any administration from any president cares. Money is there bottom line. I don’t believe their was a prescription pill epidemic either other than pill mills and they have been taken out but the DEA is still allowed to shut many distribution centers down that deliver these medicines to our pharmacies and they are still harrassing doctors. It’s being attacked from every angle. The government knows the chronic pain situation because the Institute of Medicine has announced that pain is on the rise and 100 million people are suffering with it, not including veterans or pallative care, so why are they still making it nearly impossible for patients to obtain the medications that give so many a quality of life? Do they want us all gone? To commit suicide and so they don’t have to worry about these people? It is happening, of course a coroner’s report will not say “died from complications due to pain.” Medicaid pain patients in Florida are only offered procedures. The doctors refuse to continue opiate therapy to seniors that have been on them for over 5 years. They tell them to go to rehab, then come back for injections. The patients say they would rather die than have to live life with pain again. Surely for those patients the costs of medication is much less expensive than these dangerous injections and nerve burning procedures to only have the nerve grow back or the injection only last temporary. They want the big bucks and the states let them charge it to the tax payers. Then say that Medicaid patients are draining the budget. No the doctors are draining the budgets. Menigitis is on the rise too but here in Florida they are pushing these. Something needs to be done to support pain patients.. This has went to far and is out of hand. People need to start speaking up and not let up until this problem has been resolved. Too bad for addicts, they will alsways be around. That will never stop, but making the rest suffer is not answer. Sorry for the rant. I get so many calls for help and I feel horrible because I don’t have the answers, only let’s fight it. Let’s fight back.

  2. dAve at 11:24 am

    Talk is cheap and neither senator feinstein nor the white house has a vision nor an energetic plan to help people in pain. Clearly they are overconformed to the sorry state of affairs in pain care. Tax revenues from medicine is what they care about and not people in pain