When I say “unexpected,” it was unexpected for me. Although, I think in some ways, it may have been a surprise to my doctors as well.
During the initial meeting with my surgeon, the same meeting in which I was given my diagnosis, the plan looked very different. Different from what would eventually be done during surgery. The plan was for a total thyroidectomy and a right neck dissection (some nodules were seen on the right on an ultrasound).
I felt very overwhelmed by this appointment. Not only was I given a diagnosis, which shook my life to the core, I was also given a rundown of the major surgery coming my way. This also included the “million” possible side effects and complications… at least to me it seemed like a million.
By the time I left, my head was spinning. I am not sure how much I actually remembered about side effects or complications. Most of those I ended up googling at a later time, as well as asking my doctor in more depth at our second appointment about my Google results.
Revision of the First Plan
After the first meeting with the surgeon, I was sent for a contrast CT in order to gain a better understanding of the current tumor load. This then led to a change in surgery planning. It went from a right neck dissection to a bilateral neck dissection.
This meant I would end up having an incision from ear to ear. I believe in recent years the approach has changed slightly in how these incisions are made. They are now made more along the neckline and further back instead of upward toward the ears.
“The incision still makes me self conscious some days. Maybe it’s something for a surgeon to take into consideration when planning a surgery for a patient.”Christine Pudel, MTC Contributor
I cannot change this now; however, I feel like I would have preferred that kind of incision, especially given I was in my mid-20s when I received the surgery. The incision still makes me self conscious some days. Maybe it’s something for a surgeon to take into consideration when planning a surgery for a patient.
The complication that I was the most scared of after the explanation from my doctor, was the loss of my voice and possibly needing a tracheostomy. The CT revealed tumors surrounding my vocal cord nerves. Besides those complications, I don’t even remember any other ones noted by the doctor. I know he was thorough, but nothing really stuck.
I was absolutely terrified of losing my voice. I loved to sing, let alone have conversations with family and friends. What would I do if I couldn’t talk anymore? The surgeon assured me that all of the complications he was explaining to me were very unlikely to actually happen.
Following surgery, I was severely nauseated. I vomited in the recovery room probably 8 -10 times before I was even wheeled back to my room. The next 24 hours was mostly drifting in and out of consciousness, trying to open my eyes and closing them again quickly before having to throw up again.
When I was wheeled onto the floor my room was on, my dad was standing just outside of the elevator. According to him, the first thing I said to him was “I can speak”. My voice was spared. Once the nausea wore off, this fact just made me ecstatic.
So ecstatic, when I noticed something new, I wasn’t worried about it. I assumed it would just ‘fix itself’ in a couple of days. The side effect I noticed you ask? I couldn’t lift my right arm. At least not in the same smooth motion as I was able to before the surgery.
I could move it when stretched out in front of me, but when trying to do the same on the side of my body, I would get “stuck”. I had a physical therapist come to see me. She gave me a few exercises to do to get my shoulder to get ‘unstuck’ again.
The Surgery Aftermath
It took 11 months to get an actual answer to what was going on. In that time, I did all of the exercises given to me by the hospital physical therapist. I saw a community physical therapist. At some points, I saw him 2–3 times a week without any improvement.
Eventually, I heard about nerve conduction studies that may give me an answer. I had seen so many doctors about this issue already, I lost track. So, I had to jump through some hoops to finally get a referral to a neurologist to get this study done.
Once I got there, the doctor performed a physical assessment before attaching electrodes to my body and sending electrical impulses down my arm. Even while the study went on, she was able to tell me that my spinal accessory muscle nerve seemed to be paralyzed.
Well, I finally had an answer. An answer that brought up a whole slew of new questions. Was this reversible? If so, how? If not, how do I live with it? How does my body function without it?
At this point, my trapezius muscle had atrophied significantly. My shoulder was very weak, which also led to issues in my neck. I am not able to lift my neck from a lying position, not even an inch or two.
I finally got my hands on my surgical report after my neurologist looked it up to find an answer for this paralyzation. It turns out, during the surgery, the doctors had to move a nerve to access some of the tumors they removed. This simple moving of the nerve apparently was enough to permanently paralyze the nerve.
A follow-up nerve conduction study affirmed the permanent nature of this complication 6 months after the first study was done.
Lessons Learned for the Medical Professional
I believe this is such a rare complication, that it was not something that my surgeon even mentioned to me ahead of the surgery, which is totally understandable. How could you know and explain every single small thing that could possibly go wrong in a surgery?
However, now that I have been one of those rare cases, I wish I would have been prepared for it. Maybe then it wouldn’t have taken almost a year to find the answers.
I have attempted more physical therapy with a therapist specialized in dealing with head and neck cancer patients. In that time, I have had minimal improvements. Mostly I have just learned to live with the limitations that come with it.
My surgeon did a great job with all of the work he did on me. This was truly an unexpected complication, probably for all parties involved. But every person reacts differently, right? Medicine isn’t perfect, but I am so incredibly grateful for it. After all, it saved my life.