Chapter  5

Week 19

This week has had its ups and downs. I am still fairly housebound and physically inactive. I don’t have the energy for much or an interest in much more than working at the computer, surfing the internet, etc. because it is here that I am distracted. I am currently in the process of tapering down from Ativan, which I have taken off and on for 18 months. My body had reached the tolerance stage and, instead of upping the dose from the miniscule amount I was taking, I decided to move towards freedom from its potential addictive effects. I am also now free of the Neurontin and Zanaflex, although a muscle relaxer prn at night is necessary to sleep through the spinal stiffness and slight shoulder spasms that I still have. So I feel more like me than I have for a long time. I want to be as drug-free as possible if I go into surgery and during my recovery and rehabilitation.

 Physically….I have had soreness in my scapula and shoulders every day. After doing neck exercises for the first time in a few months, I was sore. If I sleep the wrong way on my neck, I am sore. I am tired of physical discomfort and pain. I cannot get comfortable. I will be so disappointed if the neurosurgeon reports again that there is a 50-60% chance that I will feel better after surgery. But if that is the verdict, I am thinking that it is worth the risk. If I am not recovered after that, then I will put an assertive rehab plan into place.

  I have not felt consistently well now for 18 months….and in pain off and on for 5 months. But, oddly enough, I am getting used to not feeling very well. I guess this is a natural progression and, if I have to learn to live with my disability, then I will need to develop a whole new outlook on life that involves keeping pain, symptoms, and discomfort in some kind of compartment so that I can increase and maintain some kind of quality of life.

Week 20

This week I had a myelogram to provide a clearer picture of my cervical spinal structure and to confirm or dispute that bone spurs and disc degeneration were likely causing the pain in my right shoulder. The procedure itself was not difficult. I was admitted to outpatient surgery at the hospital, put in a gown,  and wheeled to the x-ray room. Then I was given a mild painkiller for the needle insertion to inject dye into my spine. The whole procedure took about 30 minutes, ending with a CT scan. The worst part of the ordeal was having to lay prone in recovery for 3 hours with my head elevated 30 degrees so that the dye would not migrate to my brain and then having to maintain this posture for the rest of the day and through the night.

A week later I met my husband at the neurosurgeon’s office to make a final decision about surgery. Oddly enough, I have had no pain for 3 weeks with little soreness or muscle spasms. In fact, I am almost symptom free at this point. I feel better, too, because I am also almost medication free for the first time in 18 months. But I have also been almost completely inactive and on bed and chair rest for months. No exercise, no walking, no lifting, no major housework, an intricate pillow arrangement in bed so that I don’t put pressure on  my shoulder and upper spine, no leisure travel, and no major work commitments.

The myelogram confirms that I have pressure on the nerve root that radiates into my right shoulder and down my right arm, likely the cause of my symptoms. The surgeon seems more enthusiastic about the surgery with this evidence in front of him. He explains that he will shave off the bone spurs and do a fusion of C5-C6 vertebrae, eliminating the motion at the joint which is causing the inflammation. The procedure takes about 2 hours.  I will stay overnight at the hospital and wear a soft collar for 4 weeks. I can sleep normally and not in a recliner. I ask him about the 50 to 60% odds that he gave me last month for resolution of symptoms. He replies that there just hasn’t been enough research on this particular symptomology to give any real definitive numbers or guarantees, noting that pain is a subjective state and not amenable to measurement. However,  many patients are pleased with their decision to have the procedure. Mostly, I watch his affect. He is less cautionary, more supportive and assertive during this visit.

Because I am feeling better now and without the tranquilizing effects of the medication I have been taking off and on for 18 months, I think about whether this is the right decision. For the first time in weeks, I have the energy to clean a few closets. I am not feeling anxious at the grocery store. Memories of the hospital emergency room and acute pain are fading. But I don’t believe that I have healed and that the hand grenade of inflammation could explode again at any time. We want to travel.

I want to be able to take a brisk 2-mile walk without feeling shoulder soreness. I’d like to return to yoga, no head or shoulder stands please!  I want to fix the structural problem that has and will likely again undermine my health, confidence, and quality of life. I want to be released from worry and obsession about every little ache and pain. I want to return to work. I want to experience the freedom of an empty nest and not the chains, loneliness, and worry that comes with a chronic disability. I will have the surgery.

Week 24

I write this 30 hours post-op at home! After a couple of weeks of feeling pretty good,  I really wondered whether I should be having this surgery. But I was having occasional soreness around my right scapula and still unable to lie comfortably on that side in bed at night. Too much activity would leave me with some spasm/tightness in both shoulders. For the last few days before surgery, I was particularly sore…so I decided not to cancel, deciding that peace of mind that I was not going to further deteriorate due to increasing bone spur growth was a good enough reason to have the surgery. While most people would be happy with the level of improvement I have been having for the last month, I am a fix-it, prepare for the future kind of person. I don’t like mystery. At a doctor’s appointment for a routine thyroid check, the MD said to me, “Are you sure it’s the right thing to do?” Yes. For me, doing the surgery is the right thing. I am tired of worrying.

We checked in at 6am to the surgery waiting room. I was in a gown in prep by 7am . The nurse gave me some circulation hosiery and a pair of blow-up leggings that would deter blood clots. The anesthesiologist came in to explain his role and the surgery in general. The anesthesia would be delivered through an iv, to which I was now hooked up. The nurse rolled me into the elevator and down to the surgery floor and into the sterile surgery room. By the time they transferred me to the surgery platform, I looked up at the lights above my head and remember nothing after that! The procedure took about 2 hours with another hour in recovery.

Once in my room, I became aware of my husband sitting next to the bed, reading a mystery. I awoke slowly, feeling no pain and in a soft cervical collar. For the rest of the day I dozed off and on. Ate lunch and dinner. Had some soreness in both shoulders and a  slight sore throat from a breathing tube inserted during the surgery. Morphine drip through an iv. Then Vicodan by mouth and a Medrol pack to cut down on the inflammation. I have a 3-inch incision on my throat a bit to the left. There are no external stitches, the incision held together by clear butterfly bandages which will dissolve in the next few weeks.

The surgeon visited early this morning and reported that, technically, the surgery went well and without a hitch. He told me to expect some shoulder soreness over the next few weeks. I could take the collar off for showering and at night while sleeping. “It really serves as a reminder not to jerk your head around quickly…” I was discharged after only a 24-hour stay. I go back to see him in 3 weeks for him to check the incision and in 6 weeks for an x-ray to see that the fusion is proceeding well. I cannot drive for 7 days or lift anything over 10 pounds for several weeks.

Today I have a lot of energy but I know that it is likely a post-surgery high due to adrenalin, corticosteroids, and Vicodan. I have a little discomfort when I swallow and  some shoulder soreness but I have had periods of relaxation and no tightness of soreness in my right scapula. I doubt that I’ll know for sure any time soon whether  the surgery has relieved all of my symptoms. Mostly, I am relieved not to have to worry about unexpected pain. I am relieved that I am on the other side of a surgery I have been thinking about for 6 months. I am looking forward to starting to exercise again and about the prospect of returning to work full-time. Lots of well wishes, flowers, food, and visits from friends and family have buoyed my spirits. It has been a long, arduous ordeal. Time to rest. I had a call from a friend of ours who had a triple anterior cervical fusion a few years ago, performed by this surgeon. “It was a piece of cake, wasn’t it?”. Yes, it was a piece of cake.

Week 25

Six days post-op at home, and things are not too bad. For the first few days at home, I had a lot of energy and was pain-free. I finished up the kids’ scrapbooks for Christmas, did a little house cleaning, entertained visitors, and even walked the dog a few times. My appetite has been fine. The doctor said that I don’t need to wear the cervical collar in bed, thank goodness. But sleep is still a challenge because I am trying to be careful about turning over suddenly, lifting my neck off the pillow, etc. Also, my lower back muscles are pretty weak, I think, because I have been sitting so much, and I can have some soreness there during the night. So, overall, I am not waking in the morning yet with a feeling of having rested deeply. I have opted not to take any sleeping pills, however, and would prefer not to get into that habit again.

At day 5, I began to descend from the post-op high, likely due to finishing up the corticosteroids and the elation of completing the surgery started to wear off. I had quite a bit of soreness in my shoulders last night, which lasted a few hours and then disappeared. Probably overdid it by trying to sit in a regular desk chair at the computer for a few hours. This morning, I was so fatigued after tossing and turning all night that I went back to bed and stayed there until 1pm !  Kind of like hitting the wall. Took a Vicodan this morning because of soreness up and down my spine. This afternoon, I decided to stick with ibuproden and seem to be doing fine. I have some sweating occasionally, but temperature is normal. No discomfort at all around the incision or in my neck. And, most importantly, my shoulders are relaxed. Any tightness on the right side is temporary and generally resolves quickly.

As I get ready for next semester, upcoming meetings and conferences, and a few job interviews in the spring, I wonder whether I will be rehabilitated by then….or will I still feel vulnerable, have difficulty sleeping, and out of shape? Not that I want to run a marathon again. But I do want to be able to go power-walking or hiking again and I want to be able to take trips without suffering for sitting on a plane or in a car for more than an hour. A few surgical internet sites suggest that I should expect 4-6 months of healing time for the bone graft. I guess it is not unlike breaking an arm or a leg. The body needs time to heal, and many systems are affected.  

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