Chapter 4

Week 14

I was in tears again this morning. While my pain is very low right now, I am physically, mentally, and emotionally worn out. Coordinating my medical care while feeling this way is a drag. I am now working on having an orthopedic MD help us figure out if the shoulder pain is referred from the C5-C6 injury or whether it is something else all together. So now I have to run down my internist to get a referral to a physiatrist at the hospital to do an EMG which will tell us if there is nerve compromise or damage at the neck and shoulder areas. Then I will cart all of the history and test results to the orthopedist next week.

  I am reading Annie Dillard’s Pilgrim at Tinker Creek. She is talking about watching the monarch  butterfly migration, as I did this fall while sitting on the deck in my lounge chair with an ice or heat pack. The monarchs flew high above the ground this year and didn’t often stop to visit the sedums and zinnias in my garden. Dillard observes that frequently the birds, insects, and animals that she encounters in the woods and by the creek have tattered wings, missing legs, or scarred hides. She draws a parallel with aging humans who develop various disorders. She likes to think of us with tattered wings, the result of the vicissitudes of living on the planet for 50 years.

But I find nothing useful or transformative about this series of traumatic pain events in my life. The 6 trips to the ER ….three for shortness of breath, 3 for acute pain. Two of the trips were in an ambulance. I cried because I remember vividly the Med Act folks, the firemen, and policemen barging into my home to attend to me. In a way, it’s like how I felt after our first house was robbed when we were away in New York City…the sanctity of our home violated.

Week 15

 I made it through the weekend trip to visit our son in college on the East coast. I had no pain in my shoulder, likely because I wore the soft collar just about everywhere. However, on Saturday night, I had to sleep on the floor in the hotel room because of some nagging soreness in my shoulder which absolutely would not quit. The floor helps me to stay immobile and get some rest.

On Monday evening as I was driving to teach class, I had a few moments where I actually felt like my old self, even though I had mild nagging soreness in my shoulder. This would come to a crashing halt after going to the therapeutic massage therapist yesterday. While he was working on my right shoulder and neck area, I had dizziness and lightheadedness

and had to stop the massage for awhile until I regained my composure. Since then, I have had renewed shoulder pain and, as a result, feel like shit again….even though the pain is very mild. It’s just that it has returned and I feel defeated, over and over again.

Should I have surgery on December 12? The bone spurring will not go away and results in chronic discomfort. My activity level is limited and my anxiety and depression level is constant. I am worn out. Most of the MD’s look at me and think that this is no big deal and that I am overreacting. I don’t care. I believe the surgery will liberate me from this horrible road trip of acute pain episodes, preoccupation with chronic symptoms, and compromised quality of life. I am improved at the moment, but need to think of this as a time to stay out of acute pain and to build my health and strength for the surgery.

Week 16

Today I visit the chiropractor, just in case my visits to the orthopedic MD and upcoming EMG and myelograms suggest no surgery indicated. I want to have some kind of supportive health care provider in my corner, so I will go for a full evaluation and, hopefully, no spinal manipulations that might kick off the pain and resulting anxiety again. During my second visit to the chiropractor, he whisked me into his consultation room with a flourish to display and discuss my full body skeletal x-rays. I look like I have an elongated “S” for a spine with shoulder, ribs, and pelvis slightly higher on the right side. He believes that my pain is due to misalignment and a problem with the site where my first rib connects to my spine in the thoracic area. His adjustments, done with a little instrument that shoots mild air  pressure at the misaligned bones and joints,  are quick and painless. He is a kind and gentle soul who seems concerned. I laugh to myself as I look at the skeletal image in front of me. It is spooky! Halloween is two days away, and I wonder if he gives a discount for x-rays performed on that day! After a third adjustment, I decide not to return to the chiropractor for awhile, until after the myelogram and a more final decision about surgery.

Week 17

I had my second opinion about surgery from the orthopedic surgeon. He was great. Young, chatty, and the first doctor who has really taken the time to explain the whole physiology of cervical disc degeneration. Of course,  I am already an expert on the subject from my endless internet research. He looks at the MRI films with us and assures me that C5-C6 fusions are common procedures, that I do not have serious osteoarthritis at all because there is no spurring anywhere else on my spine, and that surgery usually produces highly satisfactory results for pain radiating down my arm. Unfortunately, I don’t not have the classic radicular symptoms of shooting pain down my arm. However, he rules out rotator cuff problems as the source of my ongoing shoulder soreness and spasms in the scapular region of my right shoulder and upper back. These symptoms are frequently seen as a result of cervical disc degeneration that refers pain to this area. I am relieved and appreciative of his consultation with us.

Week 18

Oh, yes. I have been to see a shrink a couple of times. I initially went to explore whether I could possibly be causing my own discomfort and because I had become so tearful, distraught, withdrawn, obsessional, and feeling absolutely terrible physically. I have an odd internal gentle shaking that goes on, mostly at night throughout my whole body but sometimes during the day. I am sometimes mildly nauseous and out of breath. What we have realized, actually, is that I am probably experiencing withdrawal symptoms from the half milligram of Ativan and regular half tab of Ambien that I  have taking daily for almost 18 months. The  benzodiazepine withdrawal support sites on the internet confirm this diagnosis. It is at the lowest doses over a long period of time that the brain begins to throw tantrums that it is not getting enough of the drug which has taken over some of its key calming functions. I stopped taking the Neurontin and Zanaflex last week because, due to extreme inactivity and the neck collar, I am not having any pain or spasms. I had two days of pure hell—sobbing, shaking, getting from hour to hour. With the Ativan, I must taper down over four to six weeks with small cuts in dosage over time to adjust to the decrease in medication and allow my brain to find its own chemical balance again.

While I want to be drug-free by the time the surgery date rolls around, the shrink suggests a low dose of Celexa, but I refuse because I want to see how I do without the benzo’s or the benzo withdrawal symptoms before I add another chemical to the mix. I will continue to see the shrink, a kindly woman who is also an internist and to whom I can wail away about my medical condition for 45 minutes every two weeks. She is empathetic and makes lots of suggestions about how to cope with neck problems—special pillows at night, more alternative medicine avenues like acupuncture and a different kind of chiropractor who works with a Pilates instructor on rehab, herbs etc. She herself has had neck and shoulder problems for years but has gone the conservative route with treatment. I ask, “Have you ever had an MRI to diagnose the problem?” “No”,  she responds. “But there is probably something floating around in there.” I wonder how personality affects one’s choice of treatment. She may be content with a more sedentary and limited lifestyle and to work  around her stiffness and pain. I am a fix-it kind of person and don’t have a high tolerance for broken, messy, unclear, or ambiguous. While this is not a good reason to pursue surgery, it is an important part of the mix.

I have considered all of these things, but am hoping for a structural fix with surgery. If the myelogram does not show any nerve compression whatsoever, then I will work with the shrink to develop and stick to a rehab plan that involves exercise, stretching, and coping with a chronic illness. I am not sure that I am capable of this direction because I am impatient, obsessive, and results-oriented. On the other hand, this whole experience has been a thunderous entry into middle age and a blaring reminder that I am not 28 anymore and have to think about my health, rest, balance, and self-care in a new way.

My father-in-law, who has had numerous surgeries in his lifetime and is hyperalert to any new physical symptoms that might signal a serious problem, made a profound statement last week. He had visited a specialist to describe some worrisome physical discomfort  he was experiencing. After the standard battery of tests, the physician reported that the tests show that he had nothing to fear, although there was  no clear reason for the symptoms. “I came away from the appointment feeling assured and comfortable with the fact that the human body is mysterious sometimes…and that we just can’t have definitive answers for everything.”

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