Saturday, June 3, 2017

A Case - Dysfunction Born in the Dark

My dentist friend approached me at church and said: “I have this patient I hope you can help me with.”   I thought “I doubt it,” but continued to listen because he was my friend, and it was church.  He explained that this gentleman had lost 30 pounds, had a constant problem with taking in any food, had been to several specialists, and was miserable.  As his dentist, he had tried several times to work on his teeth but had great difficulty because of constant gagging and discomfort.

I agreed to see the patient once, to see what I could do.  I doubted I had anything to offer, and was frankly afraid of being sucked in to someone's unsolvable problem, likely with a request for narcotics, that current cure-all for unsolvable discomforts.  But I laid these thoughts aside and decided I would mostly listen, and see what developed.  Seeing the patient for free, I felt somewhat protected from an obligation to diagnose and treat the patient contrary to what I would think appropriate.  Just in case, I told my friend I would call the patient, not see him right away.

First I called the patient and gathered some information.  I agreed to meet him at the free clinic I was volunteering at for further discussion.  In this time, he told me his story, and vented his frustrations with the medical system and how he had not been effectively diagnosed or helped.  I prayed with him and his wife, at the beginning of the clinic visit with them.

I will call the patient “Jim.”  Jim had some problems with gagging ever since he was a child, but they were minor.  He was doing fine, driving a fork lift for a local warehouse, with a wife and two kids.  He was involved in his church and considered himself a born-again Christian.  When his fork lift was hit, causing some significant back strain, he was laid up for a couple of weeks.  The back pain improved, and he attempted to go back to work.  But around that time, Jim noticed a great difficulty in taking any food or drink.  Whenever he tried to get anything into his mouth, he felt a sensation of gagging, and had a very difficult time swallowing.  His worry and discomfort with this lead him to quit his job:  he could not feel comfortable working.  He had a little savings, and was able to cover the medical insurance for a while, but that time was running out after more than 6 months and many doctors' visits.  He had been to ENT and GI, had CT scans, EGD, and several tests, which were all normal.  He did the “round” of specialists, as I have heard other patient's describe it:  you are sent to one specialist, who sends you to the next, and that one continues the program and sends you on to the next.  All of them saying one after the other:  “your X system (their particular field) seems fine, but it could by a Y problem, so I am going to send you to a Y specialist.”  Or they order test after test.  It is not an uncommon occurrence these days, with the multitude of specialists and variety of tests that can be ordered.

Jim had, through his own trial and error attempts, found that he could drink liquids, by standing by the kitchen sink and sipping small amounts down.  That way if he had to spit some out, he was able to do so.  He had not eaten solid foods for months.  His family, at the dinner table, so sad to see their patriarch suffering.

I knew my first step was to listen.  So I heard it all.  I wrote the whole story down.  All of the specialists.  The various steps.  The frustrations.  The family feelings.  The anger at the doctors and the medical system.  After these two discussions, after about 2 hours total of active listening and clarifying, I asked Jim if he thought I had heard the whole story.  He said yes, I had heard him out, it seemed like I understood what he was saying.  I had, between the first talk on the phone, and our visit at the clinic, obtained some of his records as well, confirming no pathology by ENT scope, GI endoscopy, swallow evaluation, and CT imaging, various labs.  Some which had been done twice or three times.

Then, and only then, I asked him to hear me out and listen to what I had to say.  I divided my analysis of his problems into the immediate problems,  the possible causes, and the suggested approaches to solving the problems:

1.  Immediate problems:  weight loss, gagging
2.  Possible causes:  I explained to him that he had primarily a signaling problem:  that somehow his mind was getting a signal that he needed to gag.  As if there was something in the wrong place, or the wrong substance was in his mouth and stomach.  When he was trying to eat spaghetti, the signal to his brain was that he was trying to drink gasoline.  I drew out a picture of the circuit between his gut and his brain.  I acknowledged that underlying this might be a general nervous system problem that was causing it, or perhaps some disruption of the connections from his spinal chord from the fork lift accident.
3.  Suggested approaches to solving the problem.
        a.  realize that there may never be an “answer.”  And looking for a definitive cause, or the specialist who can “finally diagnose my case” may cause more harm than good.  Obviously so far, it has all just cost money and not really improved anything
        b.  look at management rather than look for cure.  If this is as good as it gets, then how can you manage your symptoms and get back to function, instead of spending all your time with doctors and in frustration?
        c.  consider counseling and biofeedback.  The problem is one of nerve connections between the gut and the brain and the feedback in the brain:  a loop.  Interrupting the process needs to focus in part in the brain.  We could try medications also to interrupt this loop, but would need counselling as well, since nothing else has yet worked.
        d.  continue to pray and seek God in the midst of the suffering.  Know that God loves and cares for you and has plans and a purpose for you.
        e.  realize that you can live on a liquid diet.  If you cannot eat solids, you can get all needed nutrients and calories in a liquid diet if you either buy supplements, or prepare various foods in a blender.  But you have to increase your calories.  If you continue to lose weight, you may need a feeding tube.

The patient and his wife both thanked me.  I asked if he wanted me to connect him with counselling or biofeedback.   He said, quite without anger, that if it was mostly in his head, he could take care of it on his own.

I heard little directly from the patient after that.  But per his dentist's report, he had made a dramatic improvement over the next several weeks.  He forced himself to eat.  He gained weight.  He stopped going to specialists.  He was ultimately able to join his family at the table, and got back to work at a much better job than before.  He was able to get his teeth worked on.  He still had a gagging discomfort, but he basically moved on and decided he would need to live with it, and that he could force his mind to deal with the discomfort.

Spiritual Problem:  Anger, with the "symptom" in general and the medical system in particular.  This was a kind of fomenting bitterness that was contributing to the problem and preventing its interruption.
Other than that, I can't think of another spiritual problem.  This case mostly illustrates that the whole person (body, mind, spirit) is quite complex (more complex than our simplified triune description).  Sometimes, no many times, as scientific doctors, we cannot find the exact “reason” for various symptoms.  Pursuing the “reason” to an extreme can cause further damage.
I think what I added to this case as a provider was primarily listening.  Hearing out his anger and frustration and allowing him to tell his story fully I think allowed him to relax, think, and listen to what I had to say as well.  We went beyond the superficial process-relationship of the doctor as analyst, and connected as persons to some degree.  And thereby built trust and from there I was able to communicate some different ways of thinking and approaching this chronic problem.

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