When we returned from India, I was unable to get into my neuro-ophthalmologist until the end of January. My retinologist was able to fit me in and she did a few more tests. During this visit, I had an eye angiogram in addition to the OCT and vision acuity exams. This is were they inject dye into your veins and take images of the blood vessels of the eye. My results during this appointment were that I had healthy blood vessels of the eye; however, she was concerned that I continued to have progressive symptoms and wanted to refer my to a retinologist at UCLA. I was able to get an appointment in the middle of February for the UCLA retinologist.
Also, the attending physician at Mayo Clinic called and spoke to me about my symptoms both previous and new since my appointment and recommended a few additional tests. Ultimately, I saw my primary care provider and she ordered a CT scan from my head to my pelvis to look for any potential cancers or other abnormalities that could cause an eye response from a systemic problem.
On December 23rd, I received a call from her that I had a nodule/mass in the lining of my lung (called the pleura) near the diaphragm as well as several borderline enlarged neck lymph nodes. Being in healthcare, I knew this location of the lung nodule was more concerning than other locations regardless of size. Also, lung cancer was one of the most common causes of paraneoplastic retinopathy. Obviously, this news ruined the holiday for us as we processed the "what ifs" and worried about getting seen quickly.
I was able to get a referral to a pulmonologist at a cancer center before the new year. Typically, the recommendation would be to get a repeat CT scan in 3 months to monitor growth; however, they were able to review a chest x-ray that I had earlier in the year (to rule out active TB) and a previous CT of the abdomen and the nodule was not present at either time. For that reason, the pulmonologist ordered a PET scan to look for activity in the lesion that would indicate certain types of cancer. Luckily, my insurance covered the exam and got the prior authorization quickly.
More to come on the PET scan results and next appointments.