I have a specific prayer request & should probably fill a few family members and friends in on what has been going on, so rather than a ridiculously long Facebook post I’m putting my blog to good use. I was informed last week that an unidentified mass was found in my neck and they will need to surgically remove it. I believe the technical term is ‘nonspecific subcentimeter structure’, but who the heck knows that that means? Let me start at the beginning…
For the last 5 years I have been in the ‘baby making’ phase of my life, seen pretty much only by OBGYNs & midwives. This past summer, I decided that it was time to start seeing a primary care physician for an annual physical. So, I made an appointment and routine blood work was done. (To all of my momma friends out there, I recommend that you do the same! Prenatal treatment is not a substitute for an annual physical, as it turns out.)
The blood work came back showing elevated calcium levels. I was sent for additional blood work, which showed the same. I was referred to Endocrinology at Geisinger. That appointment revealed 5 years of consistently elevated calcium and I was diagnosed with hyperparathyroidism. If it has been elevated for 5 years, why wasn’t it caught earlier? I believe the technical explanation was that weird things happen when you are pregnant and all my blood work prior to this had been taken during pregnancy, so one slightly elevated level wouldn’t have necessarily been a red flag. My calcium levels are not very high, but slightly elevated for such a prolonged period of time was sufficient for the doctor to feel confident in her diagnosis.
“Hyperparathyroidism is an excess of parathyroid hormone in the bloodstream due to overactivity of one or more of the body’s four parathyroid glands… The parathyroid glands produce parathyroid hormone, which helps maintain an appropriate balance of calcium in the bloodstream and in tissues that depend on calcium for proper functioning.” – Mayo Clinic
Did you know that we have 4 parathyroids, and that they are not the same as your thyroid? Neither did I. I haven’t met a single person since this diagnosis that has. In fact, I bet someone that reads this entire post will later ask me about my thyroid. Again, not the same.
The initial consult with Endo went a little something like this…
Doctor: “Do you feel fatigued?”
Me: “I have two small children.”
Me: “So, that would be a yes.”
Doctor: “Any confusion or memory problems?”
Me: “Are there moms who don’t??”
Doctor: “Appetite loss?”
Me: “I wish!”
I don’t think she has any children.
I was told that this condition is extremely rare for pre-menopausal women and for that reason my Endocrinologist wants to be aggressive. If you think about it, women struggle with bone density even without hyperparathyroidism. This condition does not allow my bones to get the calcium that they need. A common symptom is ‘fragile bones that easily fracture (osteoporosis)’. If we don’t fix this now, I can most certainly expect fractures and breaks in my future. This is the kind of thing that can result in you walking down the street, and your leg breaks. I’m pretty clumsy, so I’m not liking my odds.
I was sent for some tests & scans, including:
- more bloodwork
- a 24-hour urine collection (which as a result of having preeclampsia with my second pregnancy, I am a champ at peeing in a jug, in case you were wondering.)
- neck ultrasound
- CT scan (which makes you feel absolutely certain that you peed your pants, even though you didn’t)
- Sestamibi (which is long, very uncomfortable, has to be done twice and is highly inaccurate)
The goal for these scans was to identify which of the 4 parathyroids need to be removed. My surgeon was looking for an adenoma (noncancerous growth) or an enlargement of one or more of the glands. Normally, one hopes to not find such things, but in this case we needed to know what was causing the problem. Unfortunately, nothing showed on the scans.
Again, ‘aggressive’ was the word my ‘team’ used and so we scheduled an exploratory surgery for Monday, December 19th. The plan was to open me up, identify the 4 parathyroid glands, and see if they can tell which one is wonky. If they can, they will remove it. If they can’t, they basically play Russian roulette and remove one, then test my PTH to see if I am within normal levels. If not, they remove another… and so on until my levels are normal or all 4 are gone.
In my pre-op appointment last week, my surgeon asked if I would be willing to do another neck ultrasound as a last ditch effort, hoping that something would show. For obvious reasons, it will be better for him to know what the plan is before going in, so to Radiology I went. I don’t think anyone wants to have surgery, but especially not exploratory surgery. So, when we got the results back from this ultrasound and it showed a mass, I felt relief.
Hopefully, now that the surgeon has an educated guess as to where to start, he can go in, identify the mass (which should logically be on one of my parathyroids), remove it, confirm that my calcium levels are in the normal range, and close me up. This should mean a smaller incision, shorter surgery, and less likelihood of complications. I do plan to go as Anne Boleyn for Halloween next year, but I’d rather not have a scar that scares the children. There is the chance that the surgeon will not be able to isolate or remove the mass (or any of my parathyroids). The course of treatment if I have to live with this disorder is a daily meal of Tums. Literally, eating a crazy amount of Tums everyday. All the Mommas who struggled with heartburn will feel my fear of this!
Of course, since it’s December and I have small children, we have been passing around a cold virus for the last couple of weeks. I tried my hardest, but I fell victim this past weekend. I feel like I’m kicking it, but the final call will be made by the anesthesiologist on Monday. Health comes first, but we have already waited a couple months for this surgery to take place so I would have my mom & Jon home over Christmas break for back-up with the kids. I won’t be able to lift Annie for a week or so and I won’t be able to drive Bryan to/from preschool, so it’s essential I have some help at home post-surgery. Rescheduling would complicate things logistically. Additionally, my symptoms have compounded over the last few months. I struggle with fatigue but cannot sleep more than a couple hours a night. My hand, wrist and hip bones ache constantly. I feel like I have aged 40 years in the last two months. There is also the pesky matter of our insurance deductible, which has been met for the year. Pushing surgery back until the new year will mean paying for another deductible.
My prayer request is for this cold virus to vanish, for surgery to take place as uneventfully as possible on Monday, December 19th, for a quick recovery & a badass (but not scary) scar. If you have a few extra moments, it would be awesome to have my symptoms disappear following surgery and for there to not be any long lasting bone density effects. I appreciate it very, very much!