After being diagnosed with a rare birth defect, I discovered that not being perfect is wonderful.
By Samantha Bratz
By Samantha Bratz
Editor-at-Large
This is a brain scan showing Arnold Chiari Malformation Type I
Photo courtesy of www.uchsc.edu
This is a brain scan showing Arnold Chiari Malformation Type IPhoto courtesy of www.uchsc.edu
I remember like it was yesterday, the terrible pain shooting through my head, the sound of water rushing in my ears. I knew something was wrong but I didn’t know what. I had been to the pediatrician several times over the last few months, but my doctor could not figure out what was wrong with me so he pawned me off to the nurse practitioners in the office. They all said it was “growing pains,” and since I was 14, I was probably just feeling stress from starting high school.
Every other month or so I would end up back in the doctor’s office complaining that the headaches were getting worse and that I was constantly hearing rushing water in my ears. My list of complaints started to grow - I felt off balance all the time (my friends said I looked drunk when I walked down the hall at school), some days I would be incredibly nauseous while others I would be extremely tired. There would be days where I would come home from school, do my homework, take a shower and then be in bed by 6:30 because my head hurt so bad. I would sleep anywhere from six to ten hours a night, and I would wake up exhausted the next day. I knew something was wrong, but my doctor completely dismissed anything I had to say; he would just send me to have blood work done and each time the results came back showing nothing was wrong.
After months of tracking how severe the headaches were along with what I ate and did every day, my doctor still could not figure out what was wrong with me. At this time I could no longer bear the headaches and with the help of my mom we were able to get my doctor to see that there was really something wrong with me. He suggested I see a neurologist to “rule out a brain tumor as the cause of the headaches” – as he nonchalantly put it. I then became a patient of Dr. Peter McAllister. He reviewed my symptoms and after about 45 minutes of talking he made a referral for me to have an MRI.
When the results from the MRI came in he sat my mom and I down and said “I have good news and I have bad news. The good news is you don’t have a brain tumor. The bad news is that you have Arnold Chiari Malformation Type I (ACM I) and Pseudo Tumor Cerebri (PTC).” According to the National Organization for Rare Disorders (NORD) website www.rarediseases.org, “Arnold-Chiari Malformation is a rare malformation of the brain that is sometimes, but not always, apparent at birth. It is characterized by abnormalities in the area where the brain and spinal cord meet that cause part of the cerebellum to protrude through the bottom of the skull (foramen magnum) into the spinal canal.” In layman’s terms, I was born with part of my brain in my spinal cord. Normally the brain rests on the spinal cord, but, my cerebellum is slightly protruding into my spinal cord, therefore my coordination skills and equilibrium are off.
As for the PTC, it literally means “fake tumor.” According to www.ninds.nih.gov, PTC “is likely due to high pressure caused by the buildup or poor absorption of cerebrospinal fluid in the subarachnoid space surrounding the brain. The disorder is most common in women between the ages of 20 and 50.” PTC in basic english means that I have a big ball of pressure behind my eyes. This built up pressure can cause vision loss, which happens to be the major risk with this disorder. PTC is also to blame for the nausea, some of the headache pain, and the sound of rushing water in my ears.
I will always remember the day Dr. McAllister told me what was causing the headaches and all my other problems. I wasn’t upset or worried; I was ecstatic. I finally had an answer. I could actually go on to the next step and get treatment. Maybe I could actually lead a somewhat normal life that didn’t revolve around pain and exhaustion. I will also always remember looking over at my mom and watching her cry. She felt bad that I had suffered so much and she blamed herself for it. I got her a tissue and sat down next to her and said, “it’s not your fault. This was how I was born. There was nothing you could do to prevent it.”
As we left the doctor’s office I started to think “if I have a birth defect then that makes me a defective person. I’m imperfect. I will NEVER be perfect.” I was upset, but as time went on and I grew older I started to realize that nobody is perfect. Everybody has flaws – whether their feet are too big or they have a narcissistic personality. Perfection is what you believe it is. I no longer think of myself as a defect. I joke around about having ACM I and PTC all the time. In high school I wrote about having ACM I for my scholarship essay, and when I was awarded my scholarship I said to my mom “it’s all thanks to Arnold.” She just gave me a look and laughed.
Today I am a healthy 21-year-old college student. I get headaches from time to time, but I have learned ways to handle them. I have learned how to handle stress so it does not cause headaches. I sew, read or I listen to music when I’m stressed. With the help of medication I was able to get the ACM I and PTC under control and I have not needed to see Dr. McAllister since I was in high school.
I think of myself as unique. I figure not many people can go around saying they were born with a part of their brain in their spinal cord. Not everybody can thank dear old Arnold for getting them a college scholarship. I figure I’ll never be alone; I will always have Arnold. I’m special – because I choose to be. I have my flaws like everybody else; I can be obnoxious at times, I chew with my mouth open, and I tend to crack jokes when I attend funerals. I don’t really think of my flaws as “flaws”. They are extensions of my uniqueness. They are distinctive qualities that I possess that make me one of a kind. My imperfections make me perfect; they show that I am human. In the end I have found that yes, I am imperfect and I wouldn’t want it any other way.
Every other month or so I would end up back in the doctor’s office complaining that the headaches were getting worse and that I was constantly hearing rushing water in my ears. My list of complaints started to grow - I felt off balance all the time (my friends said I looked drunk when I walked down the hall at school), some days I would be incredibly nauseous while others I would be extremely tired. There would be days where I would come home from school, do my homework, take a shower and then be in bed by 6:30 because my head hurt so bad. I would sleep anywhere from six to ten hours a night, and I would wake up exhausted the next day. I knew something was wrong, but my doctor completely dismissed anything I had to say; he would just send me to have blood work done and each time the results came back showing nothing was wrong.
After months of tracking how severe the headaches were along with what I ate and did every day, my doctor still could not figure out what was wrong with me. At this time I could no longer bear the headaches and with the help of my mom we were able to get my doctor to see that there was really something wrong with me. He suggested I see a neurologist to “rule out a brain tumor as the cause of the headaches” – as he nonchalantly put it. I then became a patient of Dr. Peter McAllister. He reviewed my symptoms and after about 45 minutes of talking he made a referral for me to have an MRI.
When the results from the MRI came in he sat my mom and I down and said “I have good news and I have bad news. The good news is you don’t have a brain tumor. The bad news is that you have Arnold Chiari Malformation Type I (ACM I) and Pseudo Tumor Cerebri (PTC).” According to the National Organization for Rare Disorders (NORD) website www.rarediseases.org, “Arnold-Chiari Malformation is a rare malformation of the brain that is sometimes, but not always, apparent at birth. It is characterized by abnormalities in the area where the brain and spinal cord meet that cause part of the cerebellum to protrude through the bottom of the skull (foramen magnum) into the spinal canal.” In layman’s terms, I was born with part of my brain in my spinal cord. Normally the brain rests on the spinal cord, but, my cerebellum is slightly protruding into my spinal cord, therefore my coordination skills and equilibrium are off.
As for the PTC, it literally means “fake tumor.” According to www.ninds.nih.gov, PTC “is likely due to high pressure caused by the buildup or poor absorption of cerebrospinal fluid in the subarachnoid space surrounding the brain. The disorder is most common in women between the ages of 20 and 50.” PTC in basic english means that I have a big ball of pressure behind my eyes. This built up pressure can cause vision loss, which happens to be the major risk with this disorder. PTC is also to blame for the nausea, some of the headache pain, and the sound of rushing water in my ears.
I will always remember the day Dr. McAllister told me what was causing the headaches and all my other problems. I wasn’t upset or worried; I was ecstatic. I finally had an answer. I could actually go on to the next step and get treatment. Maybe I could actually lead a somewhat normal life that didn’t revolve around pain and exhaustion. I will also always remember looking over at my mom and watching her cry. She felt bad that I had suffered so much and she blamed herself for it. I got her a tissue and sat down next to her and said, “it’s not your fault. This was how I was born. There was nothing you could do to prevent it.”
As we left the doctor’s office I started to think “if I have a birth defect then that makes me a defective person. I’m imperfect. I will NEVER be perfect.” I was upset, but as time went on and I grew older I started to realize that nobody is perfect. Everybody has flaws – whether their feet are too big or they have a narcissistic personality. Perfection is what you believe it is. I no longer think of myself as a defect. I joke around about having ACM I and PTC all the time. In high school I wrote about having ACM I for my scholarship essay, and when I was awarded my scholarship I said to my mom “it’s all thanks to Arnold.” She just gave me a look and laughed.
Today I am a healthy 21-year-old college student. I get headaches from time to time, but I have learned ways to handle them. I have learned how to handle stress so it does not cause headaches. I sew, read or I listen to music when I’m stressed. With the help of medication I was able to get the ACM I and PTC under control and I have not needed to see Dr. McAllister since I was in high school.
I think of myself as unique. I figure not many people can go around saying they were born with a part of their brain in their spinal cord. Not everybody can thank dear old Arnold for getting them a college scholarship. I figure I’ll never be alone; I will always have Arnold. I’m special – because I choose to be. I have my flaws like everybody else; I can be obnoxious at times, I chew with my mouth open, and I tend to crack jokes when I attend funerals. I don’t really think of my flaws as “flaws”. They are extensions of my uniqueness. They are distinctive qualities that I possess that make me one of a kind. My imperfections make me perfect; they show that I am human. In the end I have found that yes, I am imperfect and I wouldn’t want it any other way.
1 comment:
I love you Sam!
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