Since my last post I’ve had a number of tests to explore the health issues we discussed with my new primary care physician. The bottom line so far is that the results are “…difficult to interpret.” I feel like this sums up my medical life pretty well haha. Below is an overview of what I know so far:
DEXA Scan
The DEXA scan was pretty easy to do – it uses a special type of x-ray machine that can measure a person’s bone density. This helps determine if a person has thin bones and are at risk for fractures. Typically the lower spine, hip and forearm are scanned. Unfortunately because of the rods from my spinal fusion the readings from that scan are not super reliable. My hip scan was also hard to interpret because of my contractures. Also because of my contractures we had to use my left forearm which is my dominant arm. Usually they would use my non-dominant arm but I couldn’t position it correctly for the scan. My primary care doc ordered the DEXA scan because I’ve had unexplained pain in my ribs that we suspect were fractures. I’ve had x-rays done to check for those but again, the results were difficult to interpret because of my anatomy and severe demineralization.
So what did the scan tell us? I have osteoporosis. I was referred to the Bone Fragility Clinic within the department of Orthopedic Surgery. I was able to see a certified Physician Assistant via video visit pretty quickly. During the appointment we talked about the scan, my results, and possible interventions. In talking with her and my mom we have decided to try daily injections with the goal of building new bone. Prior to starting these I had to get some additional labs done and deal with insurance coverage issues. But, everything worked out and I have officially started daily injections of Forteo. I’ll these for about two years. At that point I will likely switch over to doing a yearly infusion to maintain the bone strength.
Echocardiogram
The echocardiogram itself was okay; the tech was very nice and we chatted throughout the exam. Just like the DEXA scan, the echo was difficult at some points because of my anatomy. The report indicated that I have “Hyperdynamic systolic function” in my left ventricle and that the wall motion wasn’t “optimally visualized”. I made the mistake of googling hyperdynamic systolic function and freaked out a little bit but I’ve calmed down since. I have an appointment with general cardiology to discuss this but at this point I don’t think my primary care doctor is that concerned. My mom remembered that when I was little a cardiologist mentioned something that sounds similar to this as something to watch for as I got older. So, we’ll see what the cardiologist says.
Heart Monitor
Due to having some increased episodes of feeling like my heart was skipping beats this summer my primary care doctor also referred me to a cardiologist specializing in electrophysiology. I saw one in 2016 and was diagnosed with Wolff Parkinson White Syndrome. This means I have “an extra pathway for signals to travel between the heart’s upper and lower chambers.” This causes a higher heart rate (which I have) and explains the skippy beat feeling. At that time I did a 2 week heart monitor but the EP cardiologist determined my risk for the more severe aspects of WPW was low. I was told I didn’t need to follow up unless symptoms increased. Hence the referral this summer. I saw a different provider this time but he had access to the previous reports and notes. During my appointment this provider agreed that since my skippy beat episodes weren’t all the time or bothersome my risk for severe issues was low. But we decided to do another 2 week monitor just to be safe and have another baseline.
The only problem is that something went wrong with the monitor and instead of recording 2 weeks worth of data it only recorded 2 days… I think it might have been patient error when setting it up since we had to apply it ourselves. Whoops. The results came back showing a few episodes related to increased electrical activity. They were less than 1% of the total recording time. I wonder if the fact that the recording time was lower than what it was supposed to be will be significant. I’m waiting to hear back from the doctor on what he thinks. It would be annoying but I did indicate in a message with his nurse that I’d consider redoing the monitor if needed.
Next Steps
All in all I feel pretty good about the results of all these tests and the steps I’m taking to address any issues that we identify. Even if things are “technically difficult” or “difficult to interpret.”
