While preparing for my first surgery to treat my new diagnosis of medullary thyroid cancer (MTC), I spend a lot of my time on Google. Maybe not every patient feels like I do, but I wanted to know as much as possible. Not only about the surgery itself, but also what I could expect my life to look like afterward.
In previous columns, I talked about some of the unexpected side effects I experienced after surgery. Today I want to talk about some of the areas I wish I would have been more aware of when it comes to recovery.
In my case, having side effects from the actual anesthetic, were my biggest issue in the first 24 – 48 hours after surgery. These reactions were somewhat a surprise to me. Working as a nurse taking care of children after cardiac surgery, I knew nausea was often a common occurrence. What I wasn’t prepared for, however, was the severity in which it hit me. I could barely open my eyes the first 24 hours. Any time I did, the world began spinning even faster and I needed another kidney basin to save the sheets. Antiemetics barely touched the nausea, although I was very grateful for them. Without them, I probably would have vomited more often, even while keeping my eyes closed.
My surgeon only needed to remove a single parathyroid. Despite this fact, I experienced another unexpected, quickly fixed side effect. My arms, legs, and lips started to tingle the first night after surgery. A quick check of my calcium levels revealed a massive drop, which needed to be treated. I only required 2 doses of calcium before the symptoms completely dissipated without ever returning.
During my recovery, I spent 2 days in the hospital before being discharged. Five days post-operatively, I experienced a massive nose bleed. I had nosebleeds all of my life until getting the vessels cauterized. This one ended up being one of the worst ones I have had.
Overnight I developed a new sensation around what I thought was my trachea. It felt like a pill got stuck in my throat. I had experienced it in the hospital already. There I was told that it would resolve over the next couple of days, which it did, until day 5 when it returned. This time it was worse than in the hospital. I felt short of breath and as if my throat was closing up.
After a phone call to our local health link (a service in which nurses go through a set of questions with a patient to determine if they need to go to an emergency department, or can wait to see their family doctor, or give advice to treat their ailment at home), we were advised to go back to the hospital to be seen. At this point, I really should have remembered my discharge instructions to return to the hospital in which I had surgery. Instead, we went to another hospital in our city. After a long 8 hours, I was diagnosed with a fluid pocket that was supposed to reabsorb again.
Although I often felt very overwhelmed in my pre-operative appointments with my doctor, I wish some of the discharge teaching would have started then.
Silent ‘Normal’ Side Effects?
There are some side effects that many medical professionals may find ‘normal’ and therefore don’t talk about them with patients. In my particular case, I am, in my professional life, considered a medical professional, but maybe due to the population I care for, there were more surprises. For example, the way my lungs started hurting about 3 days after my surgery. How my entire rib caged felt like it was on fire with every breath that I took was another surprise. And yet another surprise was also how long it took for a deep breath to not be painful anymore.
Then there were some other effects that I instantly encountered, as well. I was always cold before receiving my diagnosis. It was one of my pain symptoms. The day of my surgery that changed. My hands and feet, which were always ice cold, were warm.
The diarrhea that I had been dealing with for the last few years, was gone. I had my last loose bowel movement while waiting to be taken into the OR. After I woke up, it was as if by miracle gone as well.
Long-Term Recovery’s Bumpy Road
As for long-term recovery. What would I have wished to know? I think the answer to this question that sticks out the most to me, is how long it could take to have my thyroid hormones balanced – a lengthy process of adjusting and readjusting thyroid medication dosages. I wish I knew what symptoms to look for to know when another adjustment was due.
The neck stiffness was another part of a longer-term recovery that surprised me. It took months before my range of motion returned. In my case, I didn’t drive for about 6-8 weeks after surgery, simply because I didn’t think it was safe to do so.
It took a couple more months for my range to return to my new normal. I still have some minor restrictions, 5 years later. Although it is almost completely back to normal. A contributing factor to the longer recovery may also have been the radiation I started 2 months after my surgery.
A Prepared Patient Recovers Faster?
There is never enough time, enough information, or enough mental capacity to take in all of the factors detailed here. However, count me among the patients who want to absorb as much information as possible to combat MTC.
Yet, on the other hand, I think it is important for health care providers to understand what kind of patient they are treating: the kind that easily gets overwhelmed by information, or the kind that feels more in control and more secure by knowing as much as possible.