The past ten years of my life have been rather eventful. In 2011, I was diagnosed with synovial sarcoma - a rare form of cancer. It has been the medical technology applied to my treatment plan that assisted my care team in treating the cancer and keeping it away. I learned so much over this time; I have been known to ask my providers to explain a number of reasons why and how the technologies they use work. I have learned about x-rays, (what they can and cannot show), radiation therapy machines and how they work, CTs and MRIs and what types of tissues they look at, ultrasounds and how they can utilize the physics of the gel to show tissues. Thankfully, my care team’s use of that technology helped to save my life.
Unfortunately, in 2017, I became disabled. I tried everything to avoid applying for disability, but nothing was working. I reached a point of realization that I was too sick from the pain to continue working and going to college. I was studying to go to medical school, when suddenly everything had to stop. I was heartbroken. It felt as though my world was shattered. I had recently graduated with my BS in Human Factors Psychology. I was working to finish up a pre-med program with a goal of applying to medical school quite soon. I began experiencing incredible pain in my right hip - the same place where I had previously had a sarcoma. I knew something was wrong, but the CT imaging at the emergency room could not show it. So, I returned to my oncologist in St. Louis and had an MRI, because it looked at different tissues that the CT. It also did not show anything abnormal. At that point, I was becoming increasingly concerned. I was losing my ability to walk and control my hip joint. The instability and pain continued getting worse. From my experiences, I knew that a different type of test would be necessary. So, another provider ordered an arthrogram of my hip joint. It would be focused on the joint and its connective tissues. When the dye was injected, it felt as though my hip separated. It was a tortuously painful experience. During the MRI part of the test, my hip felt as though it was coming out of its socket. It was so painful it was sickening, to say the least. However, what I was feeling and what was being seen on the imaging were not matching up. This is where I learned that although technology can be beneficial, it still takes the right eyes and mindset to see what is on the imaging.
I ended up returning to Houston, Texas, where I had my cancer treatments in 2011. It was much further from home. I knew that I needed another opinion on what was going on. My oncologist referred me to a specialized hip surgeon at Houston Methodist Hospital after verifying that the cancer had not returned. When the hip surgeon looked at my arthrogram/MRI, he saw that my hip was indeed, coming out of its socket. It was something that had not been documented in medicine. Had it not been for the technology, again, the problem would not have been seen as easily. Unfortunately, my hip had sustained a tremendous amount of damage by the time I was able to find this doctor, so the surgery was not as effective as hoped.
My hip, although its tissues were repaired, had started separating once more even though it was all healed. I began experiencing more difficulty walking all over again. That was when I had to go though my first hip replacement. A few months post-op, the other hip began doing the same thing. I ended up having both of my hips totally replaced in my 20’s. But, something else was wrong. It’s highly abnormal for hips to just come out of their sockets. A genetic counselor was next on my list of specialists to see.
The genetic counselor determined that I have Ehlers-Danlos syndrome, (EDS). It’s a connective tissue genetic disorder. It explained why my joints are so loose! In seeing this specialist, I had to undergo more new testing. A genetic test found that I carry the chek2 gene and that I am high risk for breast cancer. I now undergo high risk screening which includes breast MRIs, ultrasounds, and mammograms. Then, due to the EDS, I had to have an echocardiogram and a bone density scan. In having these tests, I have had the opportunity to see how they work. I was able to see my own tissues and identify parts that I learned about in the pre-med program. I have been able to apply my knowledge to help my understanding of what the doctors are looking for and how the technology is working to show them that. It has been absolutely fascinating!
Going through this all has been a extremely difficult. Just because something is difficult doesn’t mean one should give up. In my experiences, I have learned that someday, I’ll be ready to apply for medical school. I know I’ll go back and finish up the few courses needed and continue that process. But for now, I want to do something that will still work toward that goal. I am working on a BS in physics while I get stronger and physically ready to handle in-person courses. I want to increase my understanding of how things work and apply it to my education and experiences as a patient. Ultimately, had the arthrogram not shown the problem and the right doctor to not have seen it, I simply would not be walking. I am truly thankful to be where I am today. I have learned that technology alone cannot diagnose a patient. You need to have the eyes for diagnosis as well. Someday, I wish to use all of this to help my patients, just as my doctors have helped me.