The twenty-sixth time’s the charm

It has been exactly five months, fourteen days, and endless hours of unanswered questions. I have been to four different hospitals, undergone surgery, and had one hospital stay. Before conversing with the Skull Base Institute located in Los Angeles, California on Friday, I have seen a total of twenty-five doctors, none of whom, despite their best efforts, have given me any relief or an adequate diagnosis. All of these doctors after pouring over research, after asking numerous questions, and after completing various examinations, have given up on me. Have you ever heard of the saying the third time’s the charm? Well, I’d have to disagree with that. For me, the twenty-sixth time is.

Last Friday I didn’t go to any hospital, I didn’t have to sit in any waiting room, my dad simply set up his laptop on the kitchen table and we began the consultation. The appointment lasted a total of approximately fifteen minutes, compared to the average two to four hour painstakingly long days I have past spent at Children’s hospital in St. Louis. And in those fifteen minutes, I was told quickly and concisely the actual verdict of my situation.

After looking at my MRI scans, Dr. Shahinian (it’s a mouthful, I know), concluded that the way my cyst is positioned in my brain it is putting pressure on my optic nerve, causing my blurred vision. My troubled sleeping habits are a result of never entering into REM sleep because the location of my cyst in the pineal gland affects the secretion of melatonin in my body, which results in the ever persistent headaches I experience because my body never gets a chance to recover from the average day’s wear and tear. This, he explained, obviously could contribute to the dizziness and nausea as well. In the span of about five minutes, all of my symptoms (minus the abdomen), were answered and addressed instead of shadily being bypassed and dismissed as an unknown cause. And this guy has performed over 4,500 successful surgeries relating to cases like mine, he has even been on Oprah for his astounding work! Not one of my family members or friends doubt his expertise.

So, you’re probably wondering, what does this all mean? Well, not wanting to jump into surgery (which we were very thankful for), Dr. Shahinian has created a three step plan for me. The first step is to take melatonin every night for six weeks, which can sometimes help get my body back into it’s normal sleeping patterns and relieve some of the headaches I am experiencing on an everyday basis. In six weeks, we will consult with him again. The way he explained it to us, the melatonin really isn’t going to affect my vision, because the way the cyst is pushing on my optic nerve it is only continually going to make my vision worse. Sometimes, though, the melatonin can work wonders and the patient can completely turn around. While this is a very wonderful thing to hope for, he also said if my vision gets worse anytime before the six weeks, we are to contact him immediately and we will then decide if we should bump up the second step, which is conducting a fMRI that will track the cerebral fluid inside of my brain. Sometimes, the cyst can grow and end up blocking the track that the cerebral fluid is supposed to flow through, resulting in added pressure in my head which could be an added contribution to the blurred vision and headaches. This would all show up in the MRI. Finally, after reviewing the MRI, we would then decide if and when to do endoscopic surgery, which would ultimately completely remove the cyst from my brain and cure all of my symptoms.

If you need to take a minute to process all of this, don’t worry, I did too. It’s a lot of information, and pretty overwhelming information at that. The actual day of that appointment my blurred vision was intensified compared to the week before, and since then it has not let up. Those of you who saw me out at Homecoming (no, I did not let this stop me from going, it is my senior year after all), might have seen me look a little perplexed, because half of the time I honestly could not tell who was surrounding me. Normally I can associate people with the colors that people are wearing, but when we were taking pictures for homecoming, the majority of my friends were wearing black, and I underwent mass confusion. Not being able to find your best friend or your mom and dad in a crowd has to be one of the most terrifying experiences I have ever had, even if I was surrounded with people I am good friends with.

It hasn’t gotten much better since then. Yesterday I actually broke down at school because I got so frustrated that I could not see the work that was in front of me. We’ve already made contact with the Skull Base Institute since Friday, I had a brief consultation with a nurse on Tuesday, and we are expecting to hear from them again soon in regards to my current situation. Thankfully the vision has let up enough that I can complete some of my work, otherwise you would not be reading this right now. While we are still undergoing a bit of a waiting game again, the good news is we do actually know that these doctors will help us and give us the answers that we need. It may not be the one that we were hoping for, nevertheless, answers are answers, and I cannot stress how thankful I am for that.

Although it took awhile, and a lot of time and effort on my parents part, we finally got somewhere. So it wasn’t the third doctor, or the tenth one, or the twentieth one…but it was one of them. The moral of this week’s blog: don’t ever give up, even after the nineteenth or whatever number of times that you have failed, you never know if the next time might be the right one. Just like Forrest Gump says, “Life is like a box of chocolates, you never know what you’re gonna get.” Take the bite.