parathyroidectomy: the beginning of relief

PART 2

After my acupuncturist connected the parathyroid and calcium dots for me, I took to the internet, and what I found was jaw dropping.

“If you have high calcium, you almost certainly have a parathyroid tumor.” —The Norman Parathyroid Center

“The most common signs and symptoms are: fatigue, or feeling more tired than usual, general sense of being sick, ‘not feeling like myself’, difficulty sleeping through the night, insomnia, loss of interest in normal activities, difficulty concentrating, memory loss, body aches, increased urination, increased thirst, headaches, bone pain, hypertension, heartburn, reflux, osteopenia or osteoporosis, thinning bones, bone fractures, kidney stones, palpitations (feeling like heart is fluttering), atrial fibrillation (cardiac arrhythmia), chronic kidney disease, even leading to kidney failure and dialysis, hair loss in women”. — SW Parathyroid Center

***Symptoms I experienced are in bold; in addition, my bones and my stomach frequently hurt, I had frequent muscle cramps (despite not working out consistently or with any intensity), and I had frequent nausea (which led to my regular and avid kombucha consumption. ha!) Fortunately, my EKG’s have been normal, and though I have not been diagnosed with kidney disease, I have had pretty significant, transient mid-back pain that my surgeon thought was likely caused by some calcifications in the kidneys.***

How I Found My Surgeon

Via the internet, I found Dr. Deva Boone of SW Parathyroid Center in Scottsdale, AZ and filled out her online questionnaire. Since no one had recognized high calcium as a reason to check my parathyroid hormone (PTH), her office faxed the necessary lab work to a local lab. I had labs drawn the same day, and the next morning, she emailed me saying that it was very clear that I had a primary hyperparathyroidism, caused by a tumor on one or more parathyroid glands, and that I needed surgery (parathyroidectomy). About a week later, I had a video consult with her, and my surgery was scheduled about a month later.

Something I learned quickly is that a variety of surgeons perform parathyroidectomies; however, some surgeons perform 15-20 of these per year, and some, like Dr. Boone, perform over 3000 per year. That was an easy choice for me.

PRE-OP

On the day of the surgery, I had a sestamibi scan, which is a contrast procedure that can show where the parathyroid glands are located, as well as (sometimes) where the tumor is. There are four, and they are commonly found on the thyroid but can also be anywhere from around the jaw to down into the chest, which would require a different incision. Less experienced surgeons will use the scan to show which gland has a tumor, but the gold standard is that all four glands should be checked to ensure that there isn’t a second (or third) tumor. If only the largest tumor were to be removed, a patient would definitely improve but would not be cured due to the remaining, even if smaller, tumor, which would likely lead to another surgery at a later date.

Typically, this surgery is very quick—less than 15 minutes. Mine was scheduled to be twelve minutes but turned out to be closer to two hours, because my tumor was so old and had grown into the tissue and around the nerve that innervates the vocal cord and required more time to remove—another reason I think it’s best to go to a surgeon who specializes in this procedure!

POST-OP

This is an outpatient surgery, and patients typically go home 1.5 - 2 hours after surgery, which was my experience. When I first woke up, the pain was pretty intense, and I felt nauseated, but the recovery staff was super attentive and were at the ready with Demerol and Zofran. Overall, the pain was very manageable with tylenol and herbs (more on what I did and didn’t do post-op in the next post). We went back to our (super cute, succulent filled) airbnb and took it easy before driving back to Albuquerque the next day.

When you have a tumor on a parathyroid gland, it causes that gland to be overreactive, and the other glands essentially shut down. After the gland with the tumor is removed, you need to supplement with high doses (1500mg) of calcium for the first week to avoid numbness and tingling in hands, feet, and face, as well as a buzzing sensation. Over the following weeks, you can decrease the dosage.

Unfortunately, I had quite the struggle with this, needing to take up to three times the expected amount of calcium, as well as an increase in Vitamin D, adding calciferol, and of course, magnesium. As I write this at exactly three weeks post-op, I still have some numbness and tingling, mostly in my hands, and I’m taking 2000 - 2500mg calcium per day, which is an improvement, but not what would be typically expected post-op. My calcium is in the appropriate range, but because it dropped significantly after surgery, my body has had a difficult time adjusting. Dr. Boone thinks this is likely because of the age of my tumor and the amount of time the other parathyroid glands have been dormant.

when do you start feeling better?

My understanding is that most people feel better almost immediately after surgery and don’t have near the difficulty with supplementation/calcium absorption as I have, so if you’re reading this because you think you might have a parathyroid tumor or you’ve been diagnosed with one and are scheduled for surgery, I simply wanted to be honest about my experience. It was extremely difficult for the first ten days, and I felt worse than before surgery. Taking extremely high doses of calcium and vitamin D can increase bone, muscle, and stomach pain, and it did. It was horrible, actually, but that’s improving, and two things that I’m extremely happy about are that I am breathing so much better (I was having terrible shortness of breath before surgery), and I feel clearer. Before surgery, I asked several people if they thought I might have early onset dementia. The memory loss and confusion was really bad, and that already seems better.

Other than calcium and vitamin D supplementation (and checking blood work), there’s no official recovery prescription like physical therapy, but in the next post, I’m going to talk about the Chinese medicine principles I used to help my recovery—things like avoiding ice, using herbs and GUA SHA, how I’m treating my scar, and how I plan to strengthen my bones and muscles after the last four years of being unable to consistently exercise.

**As before, this is a reminder that I’m not a medical doctor; I’m an acupuncturist, and this is what I’ve learned through my experience. AND, I will also encourage you to continue seeking out answers for yourself, because there were several medical doctors that overlooked my lab work indicating a parathyroid tumor, as well as dismissed my symptoms as anything but the serious medical condition that it was.