On Friday morning, at 9am, I had my follow-up appointment with Dr. Henderson, a neurosurgeon in Bethesda, Maryland. My parents and I woke up around 5:50am, left home at 6:30am, and got to Bethesda around 8:15am. We met Jon-Marc, who works about 45 minutes away from Dr. Henderson's office, and we had breakfast at a little diner.
This time was very different from my last appointment; Dr. Henderson was a little late, but I felt as though he really gave me his full attention. He reviewed my new MRI and CT scans, measured the angles of my vertebrae, and decided that he wanted me to have another X-Ray done in order to get a better image. (I hadn't bent far enough in my flexion/extension MRI, so I had to redo it then.)
My support group (Jon-Marc, Mom, and Dad) and I went down the hall and got me on the list at the Bethesda MRI center. They didn't have an opening until 12:30pm, so we walked around town for a bit, looking for a place to sit, relax, and get some food. After a couple of tries, we found a Starbucks (thanks to Jon-Marc's and Dad's diligent use of Google Maps on their Blackberries.)
After that we spent the rest of our free time in the lobby of Dr. Henderson's building. I took a quick nap on the couch while Jon-Marc studied an electrician book, Mom read the newspaper, and Dad played Angry Birds on my Kindle Fire.
Finally it was time. We waited in the lobby upstairs until 12:45pm, and then I got my X-Ray done. (I don't know what her job title was, but the woman who performed my X-Ray was very kind and funny. The people at Bethesda MRI and Dr. Henderson's office are generally very helpful and compassionate.) Then around 1:30pm we went back to see Dr. Henderson.
He reviewed the new images, measured angles, and asked more questions about my symptoms and how much they limited my life. He was pretty sure that my headaches and other symptoms were caused by cervical instability rather than Chiari. He told me to try wearing my neck brace again, but this time to wear it 24/7 for two weeks. I had researched this issue, so I knew that the symptoms lined up with my symptoms; many of the symptoms of cervical instability are the same as those of Chiari.
We decided that, since I am planning on participating in the spring semester of college, it would be best to figure this out over winter break. If it is cervical instability, then wearing the brace will help. If it's not that, then wearing it won't help. When I go back to see him on December 23rd, if he thinks it's cervical instability, then we'll go ahead with the surgery (the fusion of my fourth and fifth vertebrae.) Ideally, I would recover in time for classes. If we think it's something else, then we'll just go from there. :) I'm so thankful to be working with an intelligent, caring, invested doctor who really wants to help me figure this out.
I've now been wearing the brace since late on Friday night, even out to lunch at Garfield's for Jon-Marc's and my two-and-a-half year anniversary. But that's another story for another time.
All in all, Jon-Marc's and my emotions, future plans, and thoughts are being tossed around like a lost shoe in a moonbounce. On the other hand, we may be making real progress in discovering what's really going on with my health. We may be able to fix this! But I'm trying not to get too excited...
12/11/11
12/4/11
Thankful
I'm feeling extremely thankful and blessed right now. I have a big doctor's appointment coming up on December 9th, and I organized my health binder yesterday in order to have easy access to all of my health information (diagnoses, other visits, records, etc.) It was a very cliche experience, like a journey back through time to another stage in my life.
I went back to 2007 and 2008, two years when I experienced a great amount of pain. I was growing quickly, which increased the stress on my body and therefore increased my pain. I was still very active in my youth group, often playing rough, barefoot soccer and fun games like "chicken in the henhouse" and "train wreck." I hadn't yet learned how to befriend my Chiari, so I played rough on Sunday nights, and then I was trashed Mondays and Tuesdays. I started taking Amitriptyline then (an antidepressant that can help manage chronic pain), but I wasn't used to taking daily medications, so I missed a lot of doses, throwing my body through loops.
I started working closely with Dr. Ciarkowski, my awesome family doctor who helped me to manage my pain. I made charts for her, showing my daily activities, my medications, my pain levels, and my symptoms. Through this, I learned what was triggering my headaches, and I kept a solid record of my symptoms and how they were affected by the medications I tried. Here is one of those charts. (It's two pages long.)
If you read carefully, on the first page, the first column after "Activities" is "Headache, Level 1-10." On this scale, one is a slightly annoying headache, and ten means it's almost time to go to the emergency room. (The ones that have sent me to the ER don't even rate on this scale; they'd be like a thirteen.) It's hard to read because it's in pencil, but a lot of the numbers in that column are eights and nines. My average day now is between a three and a six! Thank you, God!
I think my headaches have improved because I'm not growing anymore; I live a much calmer lifestyle than I did then; I've learned how to manage my Chiari with adaptations, medicines, and massage therapy; and I've learned to befriend Chiari and not to fight it.
In 2007 and 2008, I really pushed myself physically. My Sundays started around 8:30am, getting ready for church. Then from 9:30am-12:15pm I was in Sunday school and the main service, sitting in uncomfortable chairs. (My headache was usually around a four by this point in the day.)
After that I had lunch with some other highschoolers, and then we went to a local neighborhood where the families were really in need and the children craved love and attention. We played with the children for a couple of hours, showing them love and teaching them about God. We pushed them on swings, jumped rope with them, and played games like "Mother, may I" with them. (At this point, I often reached an eight.)
After that I usually returned home and took an hour-long nap. Sometimes I stayed out, going to the Potomac river with friends to swim or to someone else's house to hang out. Then at 5:30pm I went out again, this time to youth group, which ended at 8pm. Our youth group was very active, playing really rough games and getting really silly and competitive. (If I had taken a nap, my headache would stay around a six or seven, if I had stayed out it would often get up to a nine.)
After that, I usually went out to Starbucks and hung out with my older sister, a bunch of other kids from our youth group, and one of our leaders (--shout out to Boh!) until 10:30pm. Then I went home and crashed. (By the time I got home, my headache was often an eight or a nine.)
Obviously, I hadn't yet learned my limits. I didn't know how to live with Chiari. I couldn't find the balance between living a free, fun life and protecting myself from pain. Compared to that, my current lifestyle is very calm and balanced. After all, it mostly consists of school, homework, church, and watching TV and talking with my fiance and my family. I'm sure that my quiet lifestlye is one reason why my pain and symptoms haven't been as bad.
Also, over the years, I've learned to adapt to Chiari, to accept it as part of my life, and to work with it instead of rebeling against it. For example, when I play jump rope with kids now (I haven't in years, but just roll with the example), I always hold the rope--I never jump. The role of rope-holder is still fun, and I can sing the rhyme and count with everyone else. But this way I don't get a killer headache and miss out on other stuff because of it.
All of this to say that I am very blessed that my Chiari is doing as well as it is. I still have pain every day, but it is minimal compared to how it used to be. I praise God for this time of good health, and I pray that it lasts a long time.
I went back to 2007 and 2008, two years when I experienced a great amount of pain. I was growing quickly, which increased the stress on my body and therefore increased my pain. I was still very active in my youth group, often playing rough, barefoot soccer and fun games like "chicken in the henhouse" and "train wreck." I hadn't yet learned how to befriend my Chiari, so I played rough on Sunday nights, and then I was trashed Mondays and Tuesdays. I started taking Amitriptyline then (an antidepressant that can help manage chronic pain), but I wasn't used to taking daily medications, so I missed a lot of doses, throwing my body through loops.
I started working closely with Dr. Ciarkowski, my awesome family doctor who helped me to manage my pain. I made charts for her, showing my daily activities, my medications, my pain levels, and my symptoms. Through this, I learned what was triggering my headaches, and I kept a solid record of my symptoms and how they were affected by the medications I tried. Here is one of those charts. (It's two pages long.)
If you read carefully, on the first page, the first column after "Activities" is "Headache, Level 1-10." On this scale, one is a slightly annoying headache, and ten means it's almost time to go to the emergency room. (The ones that have sent me to the ER don't even rate on this scale; they'd be like a thirteen.) It's hard to read because it's in pencil, but a lot of the numbers in that column are eights and nines. My average day now is between a three and a six! Thank you, God!
I think my headaches have improved because I'm not growing anymore; I live a much calmer lifestyle than I did then; I've learned how to manage my Chiari with adaptations, medicines, and massage therapy; and I've learned to befriend Chiari and not to fight it.
In 2007 and 2008, I really pushed myself physically. My Sundays started around 8:30am, getting ready for church. Then from 9:30am-12:15pm I was in Sunday school and the main service, sitting in uncomfortable chairs. (My headache was usually around a four by this point in the day.)
After that I had lunch with some other highschoolers, and then we went to a local neighborhood where the families were really in need and the children craved love and attention. We played with the children for a couple of hours, showing them love and teaching them about God. We pushed them on swings, jumped rope with them, and played games like "Mother, may I" with them. (At this point, I often reached an eight.)
After that I usually returned home and took an hour-long nap. Sometimes I stayed out, going to the Potomac river with friends to swim or to someone else's house to hang out. Then at 5:30pm I went out again, this time to youth group, which ended at 8pm. Our youth group was very active, playing really rough games and getting really silly and competitive. (If I had taken a nap, my headache would stay around a six or seven, if I had stayed out it would often get up to a nine.)
After that, I usually went out to Starbucks and hung out with my older sister, a bunch of other kids from our youth group, and one of our leaders (--shout out to Boh!) until 10:30pm. Then I went home and crashed. (By the time I got home, my headache was often an eight or a nine.)
Obviously, I hadn't yet learned my limits. I didn't know how to live with Chiari. I couldn't find the balance between living a free, fun life and protecting myself from pain. Compared to that, my current lifestyle is very calm and balanced. After all, it mostly consists of school, homework, church, and watching TV and talking with my fiance and my family. I'm sure that my quiet lifestlye is one reason why my pain and symptoms haven't been as bad.
Also, over the years, I've learned to adapt to Chiari, to accept it as part of my life, and to work with it instead of rebeling against it. For example, when I play jump rope with kids now (I haven't in years, but just roll with the example), I always hold the rope--I never jump. The role of rope-holder is still fun, and I can sing the rhyme and count with everyone else. But this way I don't get a killer headache and miss out on other stuff because of it.
All of this to say that I am very blessed that my Chiari is doing as well as it is. I still have pain every day, but it is minimal compared to how it used to be. I praise God for this time of good health, and I pray that it lasts a long time.
12/1/11
Warning:
Dear fellow Chiarians,
Please refrain from whipping your hair back and forth, as this may result in cerebellar pain and a damaged reputation.
Thank you,
Katie
Please refrain from whipping your hair back and forth, as this may result in cerebellar pain and a damaged reputation.
Thank you,
Katie
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