This is a memoir about my experiences with Moyamoya that I wrote a few years back for an English class project.
My Journey Across America
Quick breaths. Legs suddenly heavy. Falling. Everything distorted. Slumping down. Breaths coming in quickly and heavily. Losing control. Slurring words, PANIC.
The journey I took from NYC to Stanford changed my life, and certainly gave me memories that I will never forget. When I was 7 years old, in September 2008, I got diagnosed with one of the rarest forms of occlusive cerebrovascular diseases, Moyamoya. This disease could cause strokes, and even death, if not diagnosed and treated early on. When I got diagnosed, I was just starting second grade at the Dalton School. However, I had been going from doctor to doctor most of the previous summer. Many of the doctors that I had visited did not even think that I had Moyamoya; a lot of them thought that I had neurocysticercosis. This is a semi-common disease; however, it did not fit my symptoms. This, they felt, was the “logical, or easy” choice. This process of doctor to doctor was evidently tiring, scary and moderately pointless to my parents. However, as a 7 year old boy, I was not nearly as aware of the gravity of the situation, knowing that my life was on the line. This naive filter blocked out much of the anxiety that I may have felt later on in my life.
This changed when we headed to John’s Hopkins hospital, in Baltimore. Actually, the only reason that we could get looked at was because my grandfather on my father’s side was the assistant professor of anesthesiology and critical care medicine there. He was able to get me an appointment in their pediatric infectious diseases department because they wanted a second opinion on my diagnosis of neurocysticercosis. At the time, all that I knew was that we I was very lucky to have an appointment. And though this was a very good thing, I could not help being slightly annoyed; my idea of lucky was not being seen and possibly stuck by another doctor. While we were there, my parents asked if the neurologist there could take a look at my MRI’s. He added that I could not get seen unless the case was life-threatening. Several hours later, after the department looked at my papers and MRI’s, we got a call saying to come in the next morning. My parents knew then that it was bad news.
It just so happened that my MRI’s fell into the hands of Dr. Lori Jordan, who happens to be one of the country’s foremost experts on Moyamoya. When we met with her, she looked at my MRI’s, then proclaimed that I had a “textbook case of Moyamoya”. We then discussed the MRI’s and what the disease actually is, and established that I needed to get a procedure done as soon as possible. Dr. Jordan said that the “parasites” that the other pediatric neurosurgeons saw were actually stroke sites. The reason why this related to me was because of my T.I.A’s. A T.I.A is a transient ischemic attack, or a minor stroke. T.I.A’s happen when blood flow to a part of the brain stops for a brief moment of time. Some last 1-2 hours, while a modicum of rare cases last all the way up to 24 hours. These “stroke sites” were where blood flow was cut off. (The first part of this memoir that was in italics was what I felt and experienced during a T.I.A)
The procedure took place to design artificial blood sources to my brain. Even though there was no damage done during my minor strokes, there was an increasing chance that I could get paralyzed. To create the actual vessels, the surgeons made small incisions on both sides of my skull. They then bypassed my carotid arteries, which were almost fully closed. After this they sealed my skull together with titanium screws. They also had to shave a small amount of my hair to get straight to the skull/skin. My carotid arteries being closed meant that I would have moderately frequent minor strokes. I was slightly scared by this at the time, and had not fully been aware of what the surgeries were doing, despite the surgeon describing it to me. I only knew that there would be many IVs and doctors. There were 2 surgeries that took place: one for the left side of my head, and one for the right. The first procedure, on the right side of my skull, took about 6 hours.
When I was being taken through the whole surgery process, everything was a blur. Pristine white walls were everywhere, and so were plenty of shiny, clear, automatically opening doors. There never seemed to be a shortage of doctors, many of which were surgeons. Some of them wore scrubs, others wore white jackets with stethoscopes around their necks. I felt lonely and unfamiliar, as I passed through hall after hall and door after door. The blur slowly stopped as we made the last turn into the surgery room. They quickly told me several things, and I said a quick prayer that the surgery would go well. The last thing I remembered after the surgery was a mask with laughing gas being put onto my mouth and then everything growing distorted and then passing out.
When I woke up, my throat was extremely sore and I felt groggy. As well as this, I was in a hospital trolley and I had several IV’s in my arms. I was groggy; I felt scared. I wanted to know what happened, but I couldn’t speak for a while, because my throat was so dry. I felt a hand on my wrist as soon as I stirred. My mom was sitting there next to me. Later I found out that she had been sitting there the whole 2 hours I had spent recovering. I was so glad and grateful that she did this, and I gave her a smile, just as a got a popsicle from the nurse to moisturize my throat. A similar process happened after the second surgery, except it was an hour or so shorter.
I had a great experience on the whole journey from doctor to doctor, to Baltimore, Maryland, and to Palo Alto, California. The reason that my experience was not negative was that my parents were very compassionate, and wherever we went, we would do something fun too. I feel like my parents doing this really helped me take my mind off things, when I am sure my parents were fretting over them 24/7. Also, I was so lucky that my grandfather was lucky enough to have a respectable job in John’s Hopkins, and help me get an appointment there. One downside to my many hospital/doctor experience were all the needles. Between my various MRI’s, blood tests, angiograms, IV’s and also the actual surgeries, there was never a shortage of needles. Though I never had a problem with them, just the amount of them in that short period of my life morphed into a semi-phobia later on.
At my time in the Stanford Pediatric hospital in Palo Alto, California, I had the support from many of my classmates in House 23. I missed out on several field trips while I was gone, and on one of them my classmates even brought a picture of me and had the words “We miss you Reddy” on the front. I was very touched by this, and could not wait to get home and back to school. I wanted to see my friends, hang out with them, and live a normal life again. In addition to the constant support, the school was very flexible and helped me get back into the groove of school smoothly after missing approximately a month.
The time that I spent around the campus of Stanford was very enjoyable, aside from all the needles and surgeries and doctors (not that I have anything against doctors). We stayed at the Westin resort around 5 minutes away from the hospital. One joke that I had with my father was that the pillows/mattress on the Westin bed were “heavenly.” So whenever we go on a trip somewhere, we always determine if they are up to the “heavenly bed” standards. One great experience that I remembered was going to watch the Stanford baseball team practice. They seemed so good, and I was determined to get as good as they were one day. I got a jersey, and a ball signed by them, and I was overjoyed. We then visited the women’s volleyball team and saw them play. They were very good, and they went on to the NCAA championships later on that year. I also got a shirt and mini-ball signed by them that I still have to this day.
Moyamoya has definitely affected how I am today. It has limited several of the sports that I can play, and it has truly changed my perspective on life and how I should use mine. First of all, because I have artificial blood vessels on the sides of my head, I cannot have anything too tight on the sides of my head. This restricts tight goggles, among other things. The reason why this is annoying to me, is the fact that it is not very common at all. There are common allergies, or afflictions that many people suffer. However, the side effects of having Moyamoya are not quite as common as many other diseases/afflictions out there. Also, I cannot play football and soccer. The reason behind this is that any sort of contact with my head is life-threatening due to the delicate artificial blood vessels in my head. The reason this affects me is that many of my friends do those sports, and frankly it is being left out that is worse than the actual sport.
This brings me to my second point. I have a different opinion, or perspective, on life. The reason that I have this newfound opinion is quite obvious. I am extremely lucky. When I say this, I do not say this because of a new phone, or winning the lottery, or getting straight A’s. I say that I am lucky because of the fact that I am not paralyzed, or lying in another operation room, or even dead. Each of these morbid scenarios could have happened just as easily as I got diagnosed. There are several reasons why I am fortunate that I am how I am now. First of all, my parents may have given up searching after hearing the incorrect diagnosis of my disease. Second, my grandfather may not have worked at John’s Hopkins, or had a very minor part in the hospital, so that I have not gotten an appointment. Additionally remarkable is the small chance that my records and MRI’s fell into the hands of Dr. Lori Jordan, who was/is one of the nation’s foremost experts on Moyamoya. As you can probably tell, the chances that I got diagnosed, and had surgery done by one of the most experienced Moyamoya surgeons of all time, Dr. Gary Steinberg, were extremely slim.
My trek from NYC to Stanford was life-changing. It has impacted me in ways that I never could have imagined and completely shaped my outlook on life.