The following was published on the TRANSVERSE MYELITIS ASSOCIATION Blog
in July 2017

Ms. Barbara Sattler is on the Board of the Transverse Myelitis Association. While a city court magistrate in Tucson, Arizona, Barbara contracted Transverse Myelitis. She took four months to recover before returning to work and was later appointed to the superior court bench. Barbara retired in 2008. Since retirement she has written three novels, legal thrillers, (Available at Amazon in paperback and Kindle) and has committed all her publications’ proceeds to the TMA.

I recently had outpatient back surgery due to spinal stenosis, an abnormal narrowing of the spinal canal which can occur in any region of the spine. My problem required cutting on the lower back. My surgeon told me it’s always easier to operate when the problem is lower rather than higher. Previously, I had had surgery for a pinched nerve with the same doctor. That surgery went well and caused little pain. I was expecting the same result. I couldn’t have been more wrong.

In addition to spinal stenosis, I have TM. It struck when I was 53 (I’m now 69). TM originally caused partial paralysis of my legs, but it receded in about twelve weeks. Four months after diagnosis, I could walk, hike, and swim. Since my diagnosis, I’ve had issues with chronic pain. Because I’ve struggled with pain for 16 years, I believed I had a high threshold for pain. I’m not sure now.

Spinal stenosis caused intense pain in both legs when I walked. Not always, but when it occurred, it ranged from a dull ache to crippling pain. Sometimes my legs would get numb and I’d have to stop because I couldn’t feel the ground. I never knew when my legs would give out. Walking with my husband, my friends, and my dogs is something I enjoy doing. I had to stop. Spinal stenosis causes different areas of pain depending on where the narrowing of the spinal canal occurs.

My surgery was scheduled for May 8th at 7:30 am. I was the first patient of the day. I woke up in recovery late morning. I hurt. The nurse gave me three pain injections before I left the hospital around noon. I was given a prescription for long-acting Morphine and Percocet for breakthrough pain.

When I met with the doc before surgery, he said “no bending, lifting or sex,” for the next 5 weeks. He never said anything about pain. He made a ‘joke’ that some patients hated him after surgery, but both my husband and I took it as a joke.

I hated him.

The next eight days were the worst in my life. I had excruciating pain 24/7. I couldn’t sleep. Lying awake between 3:00 – 6:00 am, I wondered if I had enough guts to commit suicide if the pain never stopped. I never got an answer to that question, thankfully. When I requested more pain meds, I was told, “surgery hurts.” I didn’t give up asking. My doctor finally doubled my morphine, but it wasn’t much help.

After the eighth day, life started to improve. The pain decreased although I still couldn’t sleep. At a post-surgery appointment, the doctor prescribed Flexeril. He said it was a muscle relaxer, but helpful for sleep. My insurance wouldn’t pay for the prescription because the drug was contra-indicated for seniors. I paid for it. A relative who is a registered nurse later told me she’d seen people my age have serious negative side effects. She also said it was an ‘old’ drug and there were newer, better options. Too bad I didn’t know that before I took it.

My doc said take one or two pills. I started with one and for 36 hours I felt like a zombie. I could barely get out of bed, but I couldn’t sleep.

I’ve taken morphine before in higher doses for TM pain relief. I weaned off it and never had withdrawal symptoms even though I had taken the morphine for many years. This time, it was different. I’d only taken it for eight days, but after I stopped using it, the following day, I paced back and forth for hours. I was agitated and sweating.

A couple of weeks after surgery, I went to see my pain doctor for a scheduled appointment. He spent 45 minutes with me, gave me his cell number, and prescribed medicine that made it possible for me to sleep. He also explained how to get back on my TM pain meds which I couldn’t take while I was on narcotics.

All is well now. The pain from the surgery is very mild. My TM symptoms are under control. I can sleep. The only problem I still face is a lack of energy.

WHAT I LEARNED:

People with TM and related diseases may experience more pain after surgery than healthier folks. My doc knew I had TM, but I’m not sure he understood the implications for surgery. It would be wise to see your TM doctor before surgery and get his/her opinion on whether surgery is wise. You also may need to educate your surgeon about TM.

It is important to pin down the doctor to find out what will happen after surgery. Surgeons want to cut. Often, they don’t have great bedside manner. Your surgeon may be reluctant to discuss pain. Be proactive. Ask questions. How much pain should I expect? What have other folks experienced? Have you ever done this procedure on someone with TM? You may have to push for answers. I felt blindsided. Have someone with you for this conversation. You don’t always process everything in times of stress.

Make sure you have someone to take care of you after surgery. I’m married, have a son in town, lots of friends, and two dogs. I needed someone to listen to me vent, pick up prescriptions, and feed me although I had little appetite. When I needed more meds, I was in too much pain and too angry to speak rationally. My husband made the call which resulted in me getting more pain meds.

I am now 15 days post-surgery. For many of those days, I would have given anything to not have had the surgery. Now I feel differently. I can walk without pain and my life will include walks and hikes.

Had I been at all prepared for what happened maybe those eight days would have been better? Maybe not?

4. Don’t take Flexeril.