A Pained Life: Don’t Box Us In

A Pained Life: Don’t Box Us In

Many years ago a neurosurgeon told me he was going to do a surgery similar to another one I already had, only in a different area of the brain. When I arrived at the hospital I found out he had misled me. He intended to do a cingulotomy, or mini-frontal lobotomy.

1024px-Small_box,_openI refused, but he insisted I take the preparatory tests anyway, convinced he could convince me to have the procedure. They were IQ and psych tests, apparently to have as a comparison after the operation; to see what capacities and abilities I may have lost.

One of the tests was the MMPI, Minnesota Multiphasic Personality Inventory.

This is a test that some of you may have taken. It is comprised of 567 questions to be answered “Yes” or “No.”

I quickly found that my answers were bound to be misinterpreted:

Q: My daily life is full of things that keep me interested.

Answer: No. My life and what I can do are greatly constricted by the pain.

Q. I am about as able to work as I ever was.

Answer: No.  I have been unable to work since the second the pain started.

Q. I find it hard to keep my mind on a task or job.

Answer: Yes. Because at times I am highly medicated and in horrendous pain.

Q. I am in just as good physical health as most of my friends.

Answer: No. I wish I was, but the pain has changed all that.

Q: I feel people are often staring at me.

Answer: Yes. Once my face was paralyzed, people looked and some asked, “Did you have a stroke?”

Q. I feel I look different than others.

Answer: Yes. My face is disfigured from the paralysis.

This is just a small sampling. The results when I answered truthfully showed hypochondria. Other questions showed me to have paranoia.

After I saw the results I decided to take the test again. This time I would be “deceptive” answering — as if I did not have pain, disability or disfigurement. Not surprisingly, the results showed me to be psychologically “healthier” then when I took it the first time.

We often talk about people refusing to believe in our pain. It is hard enough to have to deal with that fight.

But too often the presumptions about us bleed into the standardized testing, whether psychological or physical. Often our signs and symptoms do not mimic exactly the way the medical texts read when defining an illness or syndrome.

I completely fit the clinical text description for trigeminal neuralgia, except that I was “too young.” As a result, it took over a year before it was accepted that I did indeed have trigeminal neuralgia.

It is long past time for doctors who rely on the “normal presentations” in order to make a diagnosis to understand and accept that most of us do not fit into the standard boxes into which they try to force us.

How much easier that would make life for our doctors.  And for us.

Carol Levy

Carol Levy

Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.”  Carol was accredited to the United Nations Convention on the Rights of Persons with Disabilities, where she helped get chronic pain recognized as a disease.

Carol is the founder of the Facebook support group “Women in Pain Awareness”. Her blog “The Pained Life” can be found here.

The information in this column is not intended to be considered as professional medical advice, diagnosis or treatment. Only your doctor can do that!  It is for informational purposes only and represents the author’s personal experiences and opinions alone. It does not inherently or expressly reflect the views, opinions and/or positions of National Pain Report or Microcast Media.

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Authored by: Carol Levy, Columnist

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I Googled cingulotomy to see what it was. According to Dr. Google, they place an electrode into the middle of your brain, where the cingulate gyrus and destroy a small portion. You need the cingulate gyrus, to process emotion, control impulses and sort out pain signals.

I wanted to post a gif, but I am not that talented. Instead, just imagine a little octopus running away as fast as it could and the letters “nope” flashing across the screen repeatedly.

Carol, I am touched by your story and every story like yours. For over 100 years the medical profession have been trying to get rid of Chiropractic. We are viewed as the competition. This is true somewhat, we are the opposites. The medical doctors want you to believe they are the only ones with the answers. Chiropractors are finding the answers by not treating symptoms, by searching for and treating only the causes. There is a treatment for Trigeminal Neuralgia only done by a selected group of Chiropractors who also treat fibromyalgia and MS. I am one of them. My website has my location, I want to help you. Dr. Wayne.

Well put Carol, I’ve also had these experiences, when seeking disability I was diagnosed with ‘somataform disorder’, overly concerned with being ill.

Patients seeking health and disability insurance benefits should know that mental health coverage often pays at a lower rate, so there is some economic interest in making patients appear mentally, rather than just physically, ill.

Very good column, Carol. Your writing style fits the emergency of the pain you live with. I understand from others that I’ve talked to that the pain you live with is among the worst and needs not only sensitive diagnosis and treatment, but also sensitive, far reaching research. Thanks for writing this, it helps me understand what you and others live with daily.

Doc ForthePeople

Excellent insight and analysis Carol. As usual you seem to have hit the nail on the head. I have never taken the MMPI and I have read only some of the questions. The ones you post raise some worrisome issues for people with chronic disabilities. I believe the MMPI is standardized for people without physical disabilities. And the answers to the questions you post are always going to be “abnormal” or indicate something is different not because of a “personality” variation but strictly because of a “Physical” problem. Chronic pain will also physically limit activity which is a very different thing than a personality characteristic that limits activity.

Anyone who takes the MMPI or similar test should do everything possible to find a neuropsychologist who understands how to interpret these tests in light of the chronic pain and/or physical disability. That is not an easy task.