A Pained Life: It’s a Puzzle

A Pained Life: It’s a Puzzle

I love doing crossword puzzles. But sometimes the clues are just so darn obvious.

Like the other day. The clue was “red and black” for Number 4 down. How easy is that? Of course the answer is “colors.”

But that’s not right. There are only four spaces for the answer. Hmmm. How about “hues”? Close, not quite synonymous, but still.

file0001364649088I lightly pen in the “H.” Nope, I’m wrong. An “H” has no business being in the answer, given the clue for number 4 across.

I was getting more and more frustrated. Red and black? For goodness sakes, what else can it be but “color”?

Finally, I give up, solve all the other clues and fill in the letters.

Oh man. The answer is “seas.” It never occurred to me. I was so sure my black and white interpretation was the only one possible.

Often we have experiences with doctors where the same thing happens.

You may have heard the phrase, “When you hear hoof beats think of horses, not zebras.” Doctors tell this to medical students. Think of the common, not the uncommon; of the known, not the farfetched.

I think for those of us with chronic pain it is easy for doctors to fall into the trap of diagnosing what they know — as opposed to actually hearing and interpreting the signs and symptoms being reported by the patient. Rare is the doctor who thinks outside the box.

Often tests, MRI’s and scans find nothing that gives a cause for pain.

How can a pain be real when there is no visible proof?

My experience is a good example of a doctor willing to see zebras.

Most birthmarks do not change color or hues, but I have one on my forehead that gets redder when I am emotional because it has an active blood flow. It used to embarrass me because I could not hide my feelings.  I recall my sister once saying to me, “I know you’re mad because your birthmark is bright red.”

My ophthalmologist felt this was a sign of extra blood vessels throughout the left side of my brain and that these vessels were the cause of my trigeminal neuralgia.

But my neurosurgeon did not want to operate and remove them.  All of my tests, including arteriograms and venograms, showed no abnormalities. Therefore there was nothing for him to “fix.”

Luckily the ophthalmologist won the day. He convinced the surgeon to operate. Once inside my brain, he found dozens of teeny tiny little blood vessels that should not have been there. He cleaned out as many as he could. When I awoke the pain was gone and 99.99% of the birthmark had disappeared.

Unfortunately, the little bit that was left grew back. When it did the birthmark and the pain returned.

I am forever grateful that my ophthalmologist convinced the surgeon to operate and that — despite his misgivings — he agreed.

I am also grateful that he saw beyond the black and white of x-rays and textbook descriptions. That he saw me in all my sometimes flaming redness and the surgeon was willing to take a risk on me.

It goes beyond red and black and how obvious a clue or symptom is. It is not always black and white.

Kudos to the doctors who are not color blind. And to all of us lucky enough to have found one or more of them.

Carol LevyCarol 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

There are 4 comments for this article
  1. Brenda Alice at 11:09 am

    I can agree with some of the points above about the isolation, stress, fear, insomnia,worry, disrespect, disappointment and can add discrimination, poverty while trying to cope with diseases that have no cure but only management and pain. I personally have tried most options that you have kindly mentioned. Funny that few doctors place their hands on me. Some that you mentioned are not options because of my fusion I was told not to twist and to avoid bending. Because of interstitial cystitis I have been told to avoid baths because of the frequent infections. I would love to soak in the tub if I could manage with the sciatica and problems with pain from sitting. I would love relief from the insomnia with a break in the every 2 hours bathroom trip. It’s true that I have been a 10 year narcotic user to keep me from doing the unthinkable. I will try about anything that would give me a life and give you the narcotics that allows me to live mine. I have not given up on cures and will certainly investigate the other options you mentioned. Thank you for your Information. I remember Dr House speaking of the zebras.

  2. Stephen S. Rodrigues, MD at 3:36 pm

    This is a vital point that needs clarification. The practice of medicine was rip apart in the 1950s by the AMA when it lodged a defamation campaign against chiropractic medicine. This slander campaign has poisoned all aspects of healthcare and can be still felt in every aspect of Conventional Medicine, in articles, CME courses, conversations with specialist and in the policies and procedures that doctors use as standard of care options. Why? I can only guess – money. The 2 parts: 1. science-based medicine 2. that which is NOT science-based medicine or “pseudoscience.”

    My first 15 years of practice was ALL science-based medicine. It works beautifully, except when it did not work so beautifully. Something was failing my patients and missing. These failed therapies all had a similar set of odd balled and questionable signs and symptoms: These treatment failures usually complained of aches, pains, stiffness, insomnia, fatigue, mood changes, temperature changes, metabolic, hormonal changes and the list goes on and on.

    What to do? Conventional medicine would just give these patients new and exotic names, postural orthostatic tachycardia syndrome: so-called POTS. Within the conventional medicine arsenal you are still left to try different combinations of what did not work and these patients are suffering during this time frame. They were confused, bewildered, miserable and alone.

    What to do? Many providers don’t do anything because they have tried everything and have frustrated themselves to insanity and suicide.

    What did I do? A few patients coerced me out of the convention medicine box and to try them some things that they had found in their research and online. I did. In most occasions these off labeled or awkward remedies were significantly beneficial. You might wonder why weren’t they odd treatments included this original treatment plans? These out-of-the-box options fall within the realm of complementary and alternative medicine. The junk science arm of traditional medicine that was dumped.

    One might think that I am against science-based medicine or conventional medicine. No! I am for what works, what has worked, what will work in the future, what’s practical, safe, non-toxic, and that has been vetted over the past 100 years.

    I sense in the air a return to a traditional type of medicine, but with profits and deceptions at the core. Examples: Epidural spinal injections are totally illogical and toxic but common and used. Cost= thousands of dollars with haphazard outcome and highly dangerous and toxic. (the use of a needle)

    Nerve injection are less dangerous but also illogical with an even higher cost = tens of thousands of dollars. (the use of a needle)

    What doctors used in the 1940-70s was spinal adjustment, traction, myofasical release with hands-on and needles = 100 dollars and will help to heal and restore with NO down sides. (the use of a needle)

    We have the most expensive health care system with very poor outcomes is being perpetuated by 6 words! These trigger words are fueling your continued pain and suffering; Chiropractic Medicine, “acupuncture,” dry/wet needling, Janet Travell, trigger point injections and pseudoscience. These words will evoke the most vindictive, asinine responses from the most educated. These educated people will lash out and attack anyone who uses those words to continue the subversive campaign. They are brainwashed into being “human-guided destructive bombs” programmed to deceive and corrupt. Some are paid, have a personal agenda and some actually believe that acupuncture or CAMs have no place in modern medicine.

    The future of medicine will fail miserably if these 2 arms of traditional medicine are not blended back together. That’s all I’m advocating for; sensible, reasonable practical medicine.

  3. Sherry at 12:20 pm

    Carol, thanks for sharing your feelings and concerns as a patient suffering from trigeminal neuralgia; I understand more than you know. From my standpoint, I really do not suffer much anymore with TN since being prescribed long-term prophylaxis with Verapamil ER 240 mg caps (1) daily. This totally controls my cluster headaches also. Prayer, and lots of it, help also!

    Dr. Rodrigues, I agree with most of your pain misconceptions and I applaud you for recommending a naturopathic route other than conventional medicine. However, in my case, without traditional medicine & treatment, I don’t believe I’d still be here on this earth. My diagnoses are CRPS – Stage IV, Sjogren’s Syndrome, Raynaud’s Phenomenon, Hashimoto’s and, of course, trigeminal neuralgia. Without nerve blocks administered by an anesthesiologist at my Pain Clinic, I could never survive the excruciating & debilitating pain that CRPS causes. So, while there are alternative routes in treating pain syndromes, sometimes our only relief is by means of traditional medicine as blocking those specific nerve paths in my body provides almost total pain relief in the area of activation. I think patients in pain need to research all alternative paths for relief, but don’t discount what traditional medicine can offer.

    God Bless you both!

  4. Stephen S. Rodrigues, MD at 11:35 am

    HELP yourself with points-of-life for the eradication of long-term pain.

    This is a horrific story about the survival of a person who has a miserable amount of pain within this spectrum of conventional medicine. Being a detective, I collect as much evidence and formulate a conclusion. Ms. Levy is real, her pain is real, the sequence of events are real within her spectrum based on the conversations between her doctors.

    I apologize for intruding but there are some misconceptions, misunderstandings, faulty logic, erroneous conclusions that are inherent in the story. I would be remiss as a physician to allow these errors and concepts to be perpetuated.

    1. Long-term pain is an invisible entity, very personal and very subjective but absolutely true.
    2. Long-term pain cannot be treated as we treat structure will pain entities. For an example, tumors and aneurysms.
    3. Long-term pain can only be discovered by human hands, it can only be removed by touch from human hands or with a the simplest tools.
    4. Long-term pain can take weeks, months or even years to completely eradicate.
    5. Long-term pain will not go away all by itself. It will not go away all by nature. It can not be fixed. It is locked in the myofascial tissue. It must be treated for it to go away.
    6. Long-term pain is driven by stress, insomnia, mineral deficiencies, worry, fear, isolation, disrespect, disappointment, etc. It collects little by little, layer upon layer at a unperceived rate. Then a minor event tips you’re over the top and whammo the volcano erupts making you think it is the end of your life. Not that it was always collecting overtime being neglected.
    7. Long-term pain begins as everyday stress and strain pain that accumulates over time and explodes like a volcano.

    The treatment of long-term pain includes controlling the explosion and lava flow then you must address the stress and strain within the myofascial tissues which has accumulated over time. That requires a daily commitment to a regimen of wellness, vitamins minerals and trace elements, magnesium is mandatory, work life fund balance, movement like dancing or yoga or Zumba which includes twisting and unwinding the spine, some aerobic activity which will generate internal heat, external heat source as in a hot tub or hot bath, and sleep hygiene.

    Vital points of life for your pain:
    You must save yourself for this disease by seeking help found only in the natural medicine world.
    This pain is within a completely different category or paradigm not found in Conventional Medicine, which leads to undertreatment perpetuating your plight.
    So Attempting to treat long-term pain with medication only or single surgically removal is not logical and will be fraught with many failures.

    I would suggest you read self care textbooks on myofascial pain and dysfunction written by
    Acupressure self-help by Michael Redd Gach.
    Active Isolated stretching by Wharton.
    Devin Starlanyl. http://homepages.sover.net/~devstar/