Adriana Peeples: A Cavernous Angioma Survivor

My name is Adriana Peeples and I am a cavernous angioma survivor.  When I was five years old and just a kindergartener in elementary school, I remember having headaches all of the time and just feeling “weird” was my childlike interpretation of it. My head would hurt and then I would get sick to my stomach about once every 3 months. My mother, who was raising me alone at the time, would take me to the pediatrician and he would send me home with the diagnosis of a “normal” headache, and childhood communicable viruses, concluding our visit with a prescription of Children’s Tylenol, lots of liquids, a Fred Flintstone Vitamin,  and rest.  My grandmother would treat me with home remedies such as, hot tea, cold wash cloths on my forehead,  numerous Hail Mary’s, and cuddles with Nana.  The symptoms would subside, but never fully disappear.

Soon thereafter, when I was in first grade my mother got married and my step-dad’s job relocated us from Tucson, Arizona  to Elko, Nevada.  I lived a fairly normal childhood until we moved in 1992. After turning 8 years old, I was becoming ill fairly often again. As a new family unit, my mom and step-dad took me back to a new pediatrician, who had a similar diagnosis as my previous doctor in Arizona of “migraines.” So, life went on and I still was not missing enough school to cause my parents not to trust the migraine diagnosis.

After about 6 months in northern Nevada, my step-dad got transferred with his job to Las Vegas, Nevada. I loved being in 3rd, and 4th grade at my new school, with many new friends, experiences,  and extracurricular activities such as continuing my dance lessons and riding my bike with the neighborhood kids.  However, although I had danced since I was a young child, sometimes I would leave dance classes with a headache or nausea or I would simply start feeling bad first thing in the morning with an unusual sensation in my head.

Pain relievers and rest seemed to make my symptoms tolerable, but never fully resolve the problem. On October 29th 1993, I was playing soccer with my step-dad in the yard and I fell and my neck popped. I was overwhelmed by an instant headache, my parents made me rest, but the pain did not subside this time, it got worse, along with nausea and vomiting. A day or two had passed, the symptoms were not resolving and I was getting increasingly lethargic. Finally, the pediatrician sent me to the hospital.  We visited four different hospitals, each one sending me home with an unknown virus or bad migraine for about 3 days. My spine was x-rayed, blood was drawn, but no one thought to take a brain scan, with the symptoms I presented. My mother’s intuition and a diligent general pediatrician named Dr. Downey lead us to Sunrise Children’s Hospital. Today I am very thankful that they did not listen to  the staff at a previous hospital  who had told her to just wait it out. I may not have been here today if they had followed the advice that was given.

She drove me to Sunrise where the ER doctor was about to give me a spinal tap to check for spinal meningitis and just in the nick of time there was a shift change and another ER doctor came on duty.  He recommended that my current doctor give me a CAT Scan first.  The reason being that there was an  active bleed and swelling in my brain; a spinal tap would have killed me or at the very least left me with extensive brain damage. One CAT Scan of the  brain scan revealed blood in the middle of my brain and a lot of swelling. The doctors were surprised, it was very rare to be seen in a child with no other health issues or physical trauma to the body. A two-hour MRI scan revealed a ball of tiny mulberry-like veins sitting on my thalamus which is near the brainstem.  The blood was seeping out of the veinial malformation, causing the extreme, yet slow-moving symptoms.

I was finally diagnosed with a Cavernous Angioma, a very rare birth defect, which in the 1990’s only affected a small number of children, which were predominately in the southwestern part of the U.S. The treatment for this condition was unknown.  The first task at hand was to stabilize me, which they did quickly, but the final outcome would take 4 weeks of observations, testing, and searching for the doctor who would be confident enough to remove the cavernous angioma or to come up with a different prognosis. Some of the testing was more dangerous than the angioma itself, my parents signed numerous waivers before there was a complete diagnosis.

I laid in the hospital taking steroids to relieve the brain swelling and anti-seizure medication as a precaution, waiting on the doctors to decide what was the best way to help me. Immediately Dr. Peoples a pediatric neurosurgeon was called in who had, surprisingly enough, practiced his residency with a doctor with the reputation of being a maverick. He practiced at UCSF Medical Center, a teaching hospital and told my parents very confidently that if I were his child, he would have it removed. I had more of a chance of living a healthy life with taking the risk of removal than I did of suffering the symptoms. My parents signed the discharge papers and came home to Vegas to pack up, prepare for the worst, but to expect the best.

From least to greatest the risks of surgery were:  Extreme blood loss, weakness on my right side, seizures, complete paralyzation of my right side, memory loss, loss of function of my 5 senses, inability to swallow or breathe properly, or death; and that’s only the neurological risks. Trying to live a normal life without the removal, may have shortened my life a great deal and at the very least lessened the quality of my life. Soon thereafter, my young mother and new step-father decided this was a risk to be taken. Helping them with this decision they made for me, they engaged in much prayer and counsel with our religious family and friends.  The counsel included my step-dad’s brothers who are both surgeons, one of which happened to go to medical school with my operating surgeon, Dr. Edwards in San Francisco.

We loaded up the car with my younger brother who was 2 at the time, and my mother’s parents. My step-dad’s sister in law who also attended UCSF nursing school and who was a native San Franciscan met us there and my cousin who was considering pre-med at UCSF came with her.  I was not feeling so great.  I was having to measure my liquid intake and still on steroids to help manage the swelling in my brain and had to lay down in the back of the mini-van for much of the trip, but my family tried to find as much joy and adventure in the trip to not focus on or show the great deal of fear that they had.

For two days we went sightseeing in San Francisco and stayed with a family whom my dad worked with in the past. Then the night before the surgery we went to a little hospital hostel next to UCSF and got up early for pre-op procedures. I remember feeling nervous and scared, but I wanted my headaches to go away and I just wanted to go back to school, to play with my brother, and to go to Wal-Mart to get a ring with a blue stone to wear on my finger my first day back at school. I also wanted to play and make crafts with the social workers in the playroom I saw earlier that day on my tour of the pediatric ward.

I later found out that I did not carry the emotional load  that my family did. There is a beauty in some types of suffering the physical suffering like brain injury. My injury, stage of brain development, and small amount of life experiences made me less aware of the emotional strife that went with this situation.  Eight hours later I came out of the operating room with a grinning, glowing doctor, and full usage of my right side! My memory had retracted, I could remember events from long ago, but anything that had happened even in the past year with the exception of being in the hospital was a blur or nonexistent for a few days. I had no recollection of living in Las Vegas, I was convinced I still lived in Tucson, Arizona alone with my mom and my cat, who was actually dead by that time and I had no idea who the tall man who kept coming back to my bed was, but who resembled Tom Selleck and kept referring to me lovingly as Annie Lou.

I can still remember feeling a relief of pressure in my head, a heaviness in my body, hearing the  draining of fluid in my ear, and coming in and out of double vision. I also remember being very irritated by having to use a bed pan instead of the toilet and a slight fear that I was going to be left in what seemed like an extremely busy and public intensive care unit for no one who I trusted to hear when I needed someone to hand me the bed pan. As a 9-year-old girl these issues were much bigger to me than the adult problems that my team of doctors and nurses were watching for. The 3rd day post-op is always the worst and it was; I got two black eyes as a result of the healing of my brain. The blood had to go somewhere and it showed up around my eyes.  Fatigue failed me and I had a different kind of headache.  This time it wasn’t inside my head, it was outside. It was caused by  the 63 staples used to close up the flap of skin which was opened to get to that small, yet powerful venial interference called an angioma.

At the end of that 3rd day, the nurses made me get up.  I was first excited about using the bathroom on my own, until I saw my reflection in the mirror with a half-shaved scalp with ointment all over it, a swollen face, and two black eyes. As I turned to leave the bathroom with the nurse and head to the bed, she handed me off to my dad to take me on a walk down the hall. My mother was pregnant with my little sister at the time, about 6 months at the time, so the Tom Selleck look-alike was a big part of my recovery. The situation we were in, forced us to go from being step-dad and step-daughter to just plain family. Before my brain hemorrhage, adapting to a new family unit was not easy for me and I imagine it was not easy for my dad either, but it was the situation fate put in front of us which sealed our bond forever and didn’t shake it until I started dating boys and driving a car in high school and that’s a whole other story!

The event of brain surgery and having this birth defect changed my life forever and has been a constant reminder of mine for 25 years. It has made me who I am today. It robbed me of some the innocence of childhood, but in return made me a conscientious adult.  It taught me to learn from suffering rather than to take pity in it. I learned to share and recognize the gift of gratitude at a very young age. I discovered the natural human instinct to not only survive and persevere through every moment.

I have relapsed twice since the first neurological event I just shared. I have had two crainitomties and three bleeds. I have had to re-learn how to read, how to use my body, how to use my senses differently, how to socialize, and how to cope with emotions and physical pain. I have also learned how to be my best advocate, my own healer, my own teacher. I have learned to value my talents, and to use them as tools in my healing and share them with others who may need them too.  Most importantly I have learned that it is okay to ask for help, to seek community, support, and to be okay with falling into a valley for a while. Growth begins in the dirt and raises up to the light, but that still doesn’t mean it is going to be easy, it just might lead you down an unexpected path, which turns into something unimaginable.


-Adriana Peeples

Adriana Peeples is a mother of a vivacious 6 year old, a lifelong learner, an elementary education teacher, lover of the arts, and a truth seeker hoping to shed some light into some dark spaces.

 

 

 

 

Be first to comment

This site uses Akismet to reduce spam. Learn how your comment data is processed.