Intractable pain: The well-kept secret

Contributed by: Joan
Reviewed by: Kevin L. Zacharoff, MD, April 2014

 

[Joan is a 60 year old married woman who lives in a small farm community in Florida. When she could be more active, she worked as a bookkeeper, taught Sunday school and loved to camp, garden and quilt.]

I developed double major scoliosis [curvature of the spine] at approximately age 14. My parents did not take me to the doctor as they explained that half the family and people in general had scoliosis and that I should dry my tears and go on.

I complained frequently during my growing years about pain behind my knees and other joints, but again was told they were growing pains. At age 30 I was referred to an orthopedic doctor in Atlanta, GA. I learned that the curves were not only large and likely to continue to get worse, but I had a junction twist in the thoracic area. In 1983 a Harrington rod was placed from T-4 to L-3. I was sent home in a ceramic cast.

A small fall caused me to land on my rump on the floor, pushing the rod up between my shoulders. The rod was cut off 3″ and re-packed. Six months later an x-ray showed the rod was not fusing between the shoulders, and it was removed 3 months later. I was sent home and told to have a “nice life.”

Rather than healing and life getting better, the pain between my shoulders got more difficult to tolerate. Years went by, cervical discs herniated and we put several plates in my neck, each leaving me in more pain then before I went to the OR. Lumbar discs herniated, I developed facet joint syndrome, and a long list of other problems.

After my third neck surgery I was sent to yet another neurosurgeon. His first question was “what are you doing here? I can’t touch you. You are a flat back salvage patient.” Finally this gave me the lead needed to find my answers on the Internet, and then my diagnosis was confirmed by a physician, from films, reports and photos I mailed. It seems that those who underwent Harrington rod surgery during the 60’s, 70’s and 80’s developed a loss of back waist curve or “flat back syndrome” because all the correction was focused on side to side.

I read everything I could find on the Internet, going from orthopedic to neurosurgeon and one rude, biased, hurtful pain doctor after the next. I had lots of physical therapy, epidurals, you name it. Interesting side note, pain doctors want to talk about tolerance to medications and need for increase in medications, but do not talk about progressive diseases “progressing.”

Two of the pain doctors told me that there is no difference in chronic pain and intractable pain and they don’t treat one pain different than any other pain. Intractable pain is so serious that most states have separate guidelines in place for the treatment. Intractable Pain is constant, severe, disabling pain that makes even sleep impossible without the aid of medication. No matter what title it carries, control of some pain requires the daily use of prescription medication.

Most doctors and medical personnel are bewildered and even fearful of my treatment. This is complicated by the fact that I have been forced to train myself to not let pain show on my face or in my tone of voice. Pain makes people shun you, if you get grouchy they avoid you, if you get depressed the doctors have a reason they can make the pain your fault.

“Flat back syndrome” makes it difficult for me to straighten my knees or look straight ahead even to watch TV. I walk looking at the ground. I can’t turn my neck very much, can’t lift my arms above my head well and so much more. Yet, I must bend and lean so as to make myself look as normal as possible. This causes the doctors to believe me even less.

Articles on self-help, hope, etc. are great. But when the pain gets to this point and is now in control of my daily life we must address the absolute need for access to medications that allow a person to employ all the other techniques to cope with the pain. Medication is not a single cure all answer and in my case never prescribed in adequate dosages, but for some patients it is an absolute must.

There are people taking their life, not because they want to die nor are they depressed; they simply can’t access the medications they need to cope with the pain. What do we do so that policy makers will IMMEDIATELY take action so that no other patient takes their own life because they can’t tolerate the pain level?

I will not have access to medications for many more months as my primary care provider wants me to find a pain doctor as she only took me on when my husband had a stroke. Prior to that, we had been driving miles each way because I could not find a local doctor. My primary care provider does not want the liability since all the pain doctors around here have gone to epidurals to avoid going to jail with the other doctors that once worked in this geographic area.

I grew up singing and still believe in the children’s song, “He’s got the whole world in His hands.” Now it seems the government wants to take my life out of God’s hands and they want to play God with my life. Personally I am scared stiff, angry and out of answers.

There simply must be a way to convince our lawmakers that we are not drug seekers, we are not criminals and that WE ARE BEGGING for the HELP THAT WE MUST HAVE TO LIVE WITH ANY QUALITY OF LIFE AND THAT WE DESERVE HELP. Why in heavens name should we be punished because someone might abuse something? It is a given – people always have and always will continue to abuse drugs, alcohol and so much more. We are the sick and the elderly.

[painACTION editorial note: There are national organizations that provide support for people living with chronic pain, through their websites, telephone links, and groups that meet in many communities. Check out The American Chronic Pain Association (www.theacpa.org) and the U.S. Pain Foundation (www.uspainfoundation.org).]

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