Dear readers, I want to prevent a potential misunderstanding. On December 11th, 2011, I met with Dr. Henderson, who informed me that I did not have Chiari, but rather a vertebral instability caused by Ehlers-Danlos Syndrome. Therefore, my experiences with pain and neurological symptoms were caused by this instability in my neck--NOT CHIARI. I will not be deleting or modifying my previous posts because I think they serve to journal my process of diagnosis and treatment and the frustrations of misdiagnosis, which can be a helpful resource for any going through a similar process. However, I will be changing the page name from "Chiari 101" to something that more accurately represents the topic of Ehlers-Danlos and vertebral instability in order not to cause any future confusion.
Therefore, if you are visiting this page for information about Chiari, please keep in mind that all of my symptoms and issues were actually caused by a vertebral instability and not Chiari. Also, please be patient with me as I make these changes.
Thank you!
Katie
7/15/13
Update
I've fallen prey to a common tendency among bloggers. I write often when this specific topic is prominent in my life and heavy on my heart, but my dedication quickly fades. I'll have to recap quickly for now, as it is 1:48 A.M.
After wearing my neck brace for two weeks straight, I had another appointment with Dr. Henderson on December 23, 2011. He asked if I had gotten any relief from the brace, if it had decreased my pain. It had! It was wonderful. :) When he heard how much lower my pain levels had been with the brace, he basically said, "So when do you want to do this?" He was 95% sure that this surgery was what I needed and that it would be successful. This was the best news that I had EVER heard!
We scheduled surgery for the evening of January 5th.
Dr. Henderson would remove a vertebral disc, replace it with a bone graph, fuse my third and fourth vertebrae, and secure them with a metal plate.
On January 4th, my mom took me down to Shady Grove Hospital, where we signed a lot of forms and I had a lot of tests done, some more pleasant than others. Because I was nervous about the surgery and hadn't eaten much that day, I fainted when they drew blood. Also, they tested my clotting time by cutting a niche in my arm. Six months later, I still have a scar! I hope they got the information they needed.
We also got a lot of helpful information, including my instructions for pre-op: no perfume, no makeup, no jewelry, only comfortable clothes, no eating after 12 A.M. the night before, and no drinking anything after 12 P.M. on the day of the surgery. (Keep in mind that I didn't have surgery until after 5 P.M.) Did you know that chewing gum counts as eating? Apparently it stirs up just as much stomach acid as eating solid food.
Also, because I was only seventeen when I had the surgery, I got to talk to some pediatric nurses the day before, asking them what to expect. Honestly, the thing I feared most was the nausea and disorientation that often followed serious surgery and anesthesia. They told me that I would be medicated after the surgery and that, if I needed them, I could receive medication to treat any nausea. This made me feel much better. Also, we got permission for my husband (fiance at that time) to stay with me and my parents in my room. It put me at ease knowing I would be surrounded with people who love me.
Before my surgery the next day, Dr. Henderson came into my curtained-off stall, which was crowded with Jon-Marc, Mom, Dad, and me. He made sure we were ready, and then he prayed with us. I can't explain how comforting that was. My family, my friends, and I, and even people I hardly knew, had been praying for this surgery for a month (really for years!), but having the surgeon himself commit my future, my health, and my life into God's hands gave me unknowable peace. As he left, Dr. Henderson said, "And now you're in the best hands."
Around dinnertime on January 5th, 2012, the anesthesiologist gave me the IV. The next thing I remember after the cool feeling of the medication flowing into my arm is hearing nurses talking about me and my mom saying, "Don't worry, Kate. I'm here." I faded in and out for a while, hearing only muffled noises. It wasn't until late that night that I fully regained consciousness. I was fairly disoriented still, but aware of my surroundings at least. I had trouble sleeping, mostly because I couldn't get comfortable in the hospital bed between the weird noises and my tender neck. With the help of a nurse, I tried to get up and go to the bathroom, but I couldn't stand yet. I almost got sick when I tried to get out of bed. I still had to go, though, so I surrendered my privacy, and they gave me first a bedpan, and then a catheter. I believe it was only the next morning when I was able to get out of bed.
One issue I had was my reaction to the anesthesia. I had a very low blood pressure the whole night after surgery, and I kept setting off the heart rate monitor, which made it even more difficult to sleep. Also, I'm not sure if it was because of the low blood pressure or because of something else, but I had to wear an oxygen mask overnight. The ICU nurses took good care of me, though, especially since my mom and Jon-Marc were there to make sure they did!
The pain wasn't bad. Twenty-four hours after the surgery, I was only on extra-strength Tylenol, which had not been enough to manage my pre-surgery headaches. I was uncomfortable, though. My neck muscles were very sore, and for the first week or so I was unable to lift my head from a lying position. Once the soreness passed, which it did within a couple of days, I had complete relief from my pain. I spent one more night at the hospital, just to make sure I was good to go, and then I came home!
After a month or two, I had a recheck with Dr. Henderson, who said I was recovering very well. I soon got his permission to try running! It has been a year and a half since my surgery, and I am running three days a week, I go shopping, I am a full-time student and I work part-time, I clean my apartment, and I keep house for my husband. I could not have done any of these things before surgery. :) I owe my life to God, for providing this opportunity for treatment, and to Dr. Henderson.
As everyone close to me knows, I am a new person now. I am free to be myself without monitoring everything I do. While this instability has been more or less "fixed," I could still injure other discs and vertebrae, which would necessitate further surgeries. In order to protect myself from future injury, I try to avoid lifting anything heavy, twisting or bending my spine in any uncomfortable way, or doing anything else that could strain my back or neck.
I highly recommend Dr. Henderson to anyone who is dealing with Chiari, Ehlers Danlos, or similar issues. He really knows his stuff.
For anyone who wants to share their experiences or ask about any of mine, please email me at kfluke12@gmail.com. I would love to hear from you!
After wearing my neck brace for two weeks straight, I had another appointment with Dr. Henderson on December 23, 2011. He asked if I had gotten any relief from the brace, if it had decreased my pain. It had! It was wonderful. :) When he heard how much lower my pain levels had been with the brace, he basically said, "So when do you want to do this?" He was 95% sure that this surgery was what I needed and that it would be successful. This was the best news that I had EVER heard!
We scheduled surgery for the evening of January 5th.
Dr. Henderson would remove a vertebral disc, replace it with a bone graph, fuse my third and fourth vertebrae, and secure them with a metal plate.
On January 4th, my mom took me down to Shady Grove Hospital, where we signed a lot of forms and I had a lot of tests done, some more pleasant than others. Because I was nervous about the surgery and hadn't eaten much that day, I fainted when they drew blood. Also, they tested my clotting time by cutting a niche in my arm. Six months later, I still have a scar! I hope they got the information they needed.
We also got a lot of helpful information, including my instructions for pre-op: no perfume, no makeup, no jewelry, only comfortable clothes, no eating after 12 A.M. the night before, and no drinking anything after 12 P.M. on the day of the surgery. (Keep in mind that I didn't have surgery until after 5 P.M.) Did you know that chewing gum counts as eating? Apparently it stirs up just as much stomach acid as eating solid food.
Also, because I was only seventeen when I had the surgery, I got to talk to some pediatric nurses the day before, asking them what to expect. Honestly, the thing I feared most was the nausea and disorientation that often followed serious surgery and anesthesia. They told me that I would be medicated after the surgery and that, if I needed them, I could receive medication to treat any nausea. This made me feel much better. Also, we got permission for my husband (fiance at that time) to stay with me and my parents in my room. It put me at ease knowing I would be surrounded with people who love me.
Before my surgery the next day, Dr. Henderson came into my curtained-off stall, which was crowded with Jon-Marc, Mom, Dad, and me. He made sure we were ready, and then he prayed with us. I can't explain how comforting that was. My family, my friends, and I, and even people I hardly knew, had been praying for this surgery for a month (really for years!), but having the surgeon himself commit my future, my health, and my life into God's hands gave me unknowable peace. As he left, Dr. Henderson said, "And now you're in the best hands."
Around dinnertime on January 5th, 2012, the anesthesiologist gave me the IV. The next thing I remember after the cool feeling of the medication flowing into my arm is hearing nurses talking about me and my mom saying, "Don't worry, Kate. I'm here." I faded in and out for a while, hearing only muffled noises. It wasn't until late that night that I fully regained consciousness. I was fairly disoriented still, but aware of my surroundings at least. I had trouble sleeping, mostly because I couldn't get comfortable in the hospital bed between the weird noises and my tender neck. With the help of a nurse, I tried to get up and go to the bathroom, but I couldn't stand yet. I almost got sick when I tried to get out of bed. I still had to go, though, so I surrendered my privacy, and they gave me first a bedpan, and then a catheter. I believe it was only the next morning when I was able to get out of bed.
 |
| January 7th, 2012 |
One issue I had was my reaction to the anesthesia. I had a very low blood pressure the whole night after surgery, and I kept setting off the heart rate monitor, which made it even more difficult to sleep. Also, I'm not sure if it was because of the low blood pressure or because of something else, but I had to wear an oxygen mask overnight. The ICU nurses took good care of me, though, especially since my mom and Jon-Marc were there to make sure they did!
The pain wasn't bad. Twenty-four hours after the surgery, I was only on extra-strength Tylenol, which had not been enough to manage my pre-surgery headaches. I was uncomfortable, though. My neck muscles were very sore, and for the first week or so I was unable to lift my head from a lying position. Once the soreness passed, which it did within a couple of days, I had complete relief from my pain. I spent one more night at the hospital, just to make sure I was good to go, and then I came home!
 |
| My mom, dad, and fiance on January 7th |
 |
| My mommy. She slept in that chair all night. |
 |
| A few days after surgery |
After a month or two, I had a recheck with Dr. Henderson, who said I was recovering very well. I soon got his permission to try running! It has been a year and a half since my surgery, and I am running three days a week, I go shopping, I am a full-time student and I work part-time, I clean my apartment, and I keep house for my husband. I could not have done any of these things before surgery. :) I owe my life to God, for providing this opportunity for treatment, and to Dr. Henderson.
 |
| Two weeks after surgery |
I highly recommend Dr. Henderson to anyone who is dealing with Chiari, Ehlers Danlos, or similar issues. He really knows his stuff.
For anyone who wants to share their experiences or ask about any of mine, please email me at kfluke12@gmail.com. I would love to hear from you!
 |
| June 28th, 2013 |
12/11/11
Dr. Henderson Follow-up
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...
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...
12/4/11
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
11/29/11
Finding a Happy Medium
I think it's interesting how differently people handle Chiari. The woman in the first video is so perky and optimistic it's sickening. FYI lady, there is no "fix" for Chiari. (For some people, surgery can help, but it is in no way a cure.) Then there is the guy from the second video, who is fed up with ignorant doctors and disbelieving friends. He plays the victim role, saying he "suffers" from Chiari. Maybe the way one handles Chiari is based on one's experiences. The woman was diagnosed and had surgery fairly soon after her symptoms started. She was blessed to find a good neurosurgeon that quickly. On the other hand, the guy had had pain since childhood, and had experienced years and years of ignorant, hurtful doctors and friends who had told him that his was crazy.
That's something to keep in mind: everyone's experience with Chiari is different. One has to choose how to handle it.
11/28/11
A Crappy Day (but God is still good!)
Today is not going well. Last night I had major brain fog--I couldn't think at all; I couldn't remember what I was doing; and I couldn't focus on anything. I finally gave up on my homework when I had spent an hour writing less than a sentence. I went to sleep at 9:30pm. I woke up again at 11:45pm, feeling nauseous and restless. I watched Friends until I finally felt good enough to sleep again around 2am. Needless to say, I did not sleep well.
This morning I still have brain fog, but not quite as bad as last night. I was able to get ready for class, and I left on time. I got to campus at 9:45am; my first class started at 10:10am.
For the past couple of days, I have had a pretty bad headache, so I really needed not to walk today, as walking would make it worse. This map shows my path this morning. The gray line is me driving; the orange line is me on the campus bus (the PanTran.) I tried to park on East Campus, where my classes are, but there weren't any spaces, not even handicapped. So I drove over to West Campus, praying that I made it in time for the bus, which left at 10:05am (five minutes before my class started.) I parked in a handicap spot close to the bus stop (which is the orange star.)
I made it to the bus and got on, but there weren't any open seats. A few of us stood in the aisle and held onto the rails. The only rail that wasn't already taken was above my head, so I held on to that. I already have balance problems, so I almost fell over a few times, especially when the bus turned. And it didn't help my headache that I strained my neck by holding my arm above my head and by trying to balance myself against the swaying of the bus. I would have been better off walking across campus.
Thankfully, the bus dropped me off right in front of my classroom building, but I was still late to class. Once I was all settled in my seat in class, I turned around to get my water out of the side pocket of my backpack. It wasn't there. I assume that it fell out during the drive to school, and that it is sitting in the trunk of my car on the other side of campus.
I always carry water with me. I have for years. I started keeping a bottle of water with me when I started having panic attacks; now, as long as I have water and my anti-anxiety medicine, I can get out of a panic attack. Also, (I think this is a Chiari symptom) sometimes I feel out of nowhere like I'm going to gag. My throat just tingles and spasms for no reason. Drinking makes this feeling go away--another reason to have water with me all the time. So when I realized I had left my water in the car, it was kind of a big deal.
By the grace of God, I made it through my first class without panicking and without my throat spasming. As soon as class was over, I came down to the Student Center and bought a bottle of water.
There's some other stuff going on that is adding to my bad day. My digestive tract has been upset for the past week or so, which is somewhat normal for me, but it's still frustrating, and it makes using a public bathroom really uncomfortable. Also, finals are next week, and I'm feeling particularly frustrated with my Chiari.
As someone who has pain every day, and whose life is severely dictated by which activities are ok and which will hurt me, I get jealous when I hear about someone who has Chiari but only has minimal symptoms. There are some videos on YouTube by people who have Chiari; some of these people experience very debilitating symptoms, and some of them just have a headache every now and then. However, people in both situations have posted videos about how awful their lives are because they "suffer" from Chiari. It's not that I don't sympathize with them; I do, and I know that I am particularly blessed to have the mobility and the abilities that I have. But sometimes I get sick of hearing it.
Sometimes I want to scream out, "My life is more limited than yours is, so stop complaining!" Go to my page titled "The Definition of Chiari," and you will see a list of Chiari symptoms; I have marked the thirty-seven symptoms that I have with an *.
I wear sneakers 95% of the time because other shoes don't have enough impact absorption. I drag a wheeled backpack around campus because carrying a normal one gives me an awful headache every time, and I can't keep up with my homework through that pain. I go to a local college and live with my parents because I couldn't live in a dorm room (when my headaches get bad, I need someone around to take care of me.) My fiancé and I don't take day trips because the drives hurt me. We probably won't be able to have kids because I wouldn't be able to take care of them, and because Chiari is genetic (I don't want to pass this on.) I also have TMJ (Temporomandibular Joint Disorder), IBS (yes, Irritable Bowel Syndrome), and Ehlers-Danlos Syndrome.
"Top that!"
But then I remember the other stuff I have: a loving, supportive fiancé and family, a safe home, an education, mobility, life goals, life itself, and a loving Creator who will be with me through every disappointment and every headache. Sometimes Chiari just plain sucks, but I can still be thankful for the good stuff I have, and I can remember that God made me who I am for a reason. After all, no matter how difficult and frustrating life is, God is still good.
Image:
Shepherd University. "Campus Maps." Map. Shepherd University. Shepherd University, n.d. Web. 28 Nov. 2011.
11/25/11
It's Electric--Boogy Woogy Woogy
I went Black Friday shopping today; I'll talk about that later. (It was fun.) Something else that happened today was that I experienced a new symptom. I've never heard of it before, but my mom (who also has Chiari) says she has experienced it before. It felt like an electric shock in my right trapezius muscle (the one that runs between the neck and the shoulder, and then goes down the spine.) As far as I can find, this doesn't have a technical term beyond "that weird, electric-shock-like-feeling." I will be adding this to my list under "The Definitions of Chiari"--if you find a technical term for this, please comment it!
11/22/11
Dr. Henderson: July 2011
Back in July, I met with Dr. Fraser Henderson for the first time; he's a neurosurgeon who works out of Bethesda, MD. My support system (i.e. Mom, Dad, and Jon-Marc) went with me. We brought all of my past X-Rays and MRI films, and he reviewed them. We waited a long time in the exam room (over forty-five minutes) before we saw his face. He was a very pleasant guy. He used a lot of medical terms I didn't understand, but I respected him for not dumbing it down like many doctors do.
He then did a series of neurological and physical tests on me, testing my reflexes, my pupil dilation, my skin sensitivity (to sharp pinpricks), my hearing, my eyesight, my balance, my neck extension and flexion, and other such things. He asked rushed questions about my medical history and my symptoms.
After the exam, we followed him into his office, a rich, leather-furniture-and-bronze-busts type of place. He called someone (his secretary maybe), and we listened as he dictated his notes from our appointment. We interrupted him many times, correcting such significant mistakes as the severity of my headaches, and, oh yeah--my name! He referred to me as Sarah--my mom's name is Sarah. My name is Katie. Hey, at least he had the right family!
He then proceeded to tell us he didn't think I had Chiari.
Say what now?!
I wanted to cry. Here I was, searching for answers, hoping that I would get some relief from the pain (from CHIARI) and this guy was trying to tell me that I don't have it! He listed a couple of other things it might be, like cervical subluxation and occipital neuralgia.
Well, despite my first reaction (resentment, disbelief, and fear) I started to wonder if he could be right, so I researched these other illnesses. Cervical subluxation can produce some symptoms that resemble Chiari: neck pain, weakness, numbness, and tingling*. Occipital neuralgia can cause: "aching, burning, and throbbing pain that typically starts at the base of the head and radiates to the scalp," "pain behind the eye, sensitivity to light, and pain when moving the neck"**.
After reading these descriptions, I understood why Dr. Henderson wanted to eliminate them as possibilities before treating me. I especially understood his skepticism of my Chiari because I was diagnosed with Chiari Type 0, which is the least identified type. Among many medical circles, Type 0 is not recognized.
As my only directions for following up with Dr. Henderson, I got a CT scan of my neck, I tried wearing a neck brace, I got blood tests (for digestive issues), I'm going to visit an oral surgeon (for TMJ), and I got a flex and extension MRI of my neck (which hurt like crap.) Since I did all of these things, my mom and I have been calling his office, trying to find out what we are supposed to do next.
Receptionist: "Did he tell you to come back for a follow-up appointment?"
Mom: "No, he didn't say anything about that."
Receptionist: "Did he tell you who to send the reports to?"
Mom: "No."
_____________________________________________________
Me: "Did he tell me about anything that would help the pain?"
Jon-Marc: "I don't think so."
Me: "What did he tell us?!!"
I called a couple of days ago, and we finally made some progress. The woman I spoke to over the phone established that I needed to schedule a follow-up appointment. Dr. Henderson was booked until March 2012, but there was a cancelation for the early morning of December 9th.
I took it.
Hopefully, five months after our first appointment, Dr. Henderson will give me some answers, rather than more questions.
*Schueler, Stephen J., et al. "Spinal Subluxation Symptoms." FreeMD. FreeMD, 23 Jan. 2011. Web. 22 Nov. 2011.
**WebMD. "Occipital Neuralgia." WebMD. WebMD, LLC, n.d. Web. 22 Nov. 2011.
He then did a series of neurological and physical tests on me, testing my reflexes, my pupil dilation, my skin sensitivity (to sharp pinpricks), my hearing, my eyesight, my balance, my neck extension and flexion, and other such things. He asked rushed questions about my medical history and my symptoms.
After the exam, we followed him into his office, a rich, leather-furniture-and-bronze-busts type of place. He called someone (his secretary maybe), and we listened as he dictated his notes from our appointment. We interrupted him many times, correcting such significant mistakes as the severity of my headaches, and, oh yeah--my name! He referred to me as Sarah--my mom's name is Sarah. My name is Katie. Hey, at least he had the right family!
He then proceeded to tell us he didn't think I had Chiari.
Say what now?!
I wanted to cry. Here I was, searching for answers, hoping that I would get some relief from the pain (from CHIARI) and this guy was trying to tell me that I don't have it! He listed a couple of other things it might be, like cervical subluxation and occipital neuralgia.
Well, despite my first reaction (resentment, disbelief, and fear) I started to wonder if he could be right, so I researched these other illnesses. Cervical subluxation can produce some symptoms that resemble Chiari: neck pain, weakness, numbness, and tingling*. Occipital neuralgia can cause: "aching, burning, and throbbing pain that typically starts at the base of the head and radiates to the scalp," "pain behind the eye, sensitivity to light, and pain when moving the neck"**.
After reading these descriptions, I understood why Dr. Henderson wanted to eliminate them as possibilities before treating me. I especially understood his skepticism of my Chiari because I was diagnosed with Chiari Type 0, which is the least identified type. Among many medical circles, Type 0 is not recognized.
As my only directions for following up with Dr. Henderson, I got a CT scan of my neck, I tried wearing a neck brace, I got blood tests (for digestive issues), I'm going to visit an oral surgeon (for TMJ), and I got a flex and extension MRI of my neck (which hurt like crap.) Since I did all of these things, my mom and I have been calling his office, trying to find out what we are supposed to do next.
Receptionist: "Did he tell you to come back for a follow-up appointment?"
Mom: "No, he didn't say anything about that."
Receptionist: "Did he tell you who to send the reports to?"
Mom: "No."
_____________________________________________________
Me: "Did he tell me about anything that would help the pain?"
Jon-Marc: "I don't think so."
Me: "What did he tell us?!!"
I called a couple of days ago, and we finally made some progress. The woman I spoke to over the phone established that I needed to schedule a follow-up appointment. Dr. Henderson was booked until March 2012, but there was a cancelation for the early morning of December 9th.
I took it.
Hopefully, five months after our first appointment, Dr. Henderson will give me some answers, rather than more questions.
*Schueler, Stephen J., et al. "Spinal Subluxation Symptoms." FreeMD. FreeMD, 23 Jan. 2011. Web. 22 Nov. 2011.
**WebMD. "Occipital Neuralgia." WebMD. WebMD, LLC, n.d. Web. 22 Nov. 2011.
The Haircut
I got my hair cut today. It had grown out to my collarbone, and it was starting to hurt my neck. I have very thick hair, so it weighs a lot and strains my neck when it is long. Also, my hair is curly, so I usually just shower and add a little gel; I don't blow dry or straighten it most of the time. As it grew out to my collarbone again, though, it was starting to hurt even just to work the gel into it. I knew it was time to cut it again. :(
I get tired of keeping it the same length, since I cut it when it reaches my collarbone, and I often just trim it a couple of inches. This time, I wanted to do something different. I cut it short. :) I wanted something playful, light, and fun that would work with my curly hair. This was my example for my hairdresser (my oldest sister.)
However, my hair is much more curly than Mandy Moore's. I straightened it to make it look like this, and it's partially pulled back, but here is my new hair!
Image:
Eva. "NEW Mandy Moore Cute Short Hairstyles Pictures 2010." Hairstyle and Haircut Blog. Eanext Hairstyles, n.d. Web. 22 Nov. 2011.
I get tired of keeping it the same length, since I cut it when it reaches my collarbone, and I often just trim it a couple of inches. This time, I wanted to do something different. I cut it short. :) I wanted something playful, light, and fun that would work with my curly hair. This was my example for my hairdresser (my oldest sister.)
However, my hair is much more curly than Mandy Moore's. I straightened it to make it look like this, and it's partially pulled back, but here is my new hair!
Image:
Eva. "NEW Mandy Moore Cute Short Hairstyles Pictures 2010." Hairstyle and Haircut Blog. Eanext Hairstyles, n.d. Web. 22 Nov. 2011.
11/20/11
11/18/11
The Backpack Special
I've talked at great length about how painful walking can be for Chiarians,
but lifting objects of any substantial weight can also hurt a lot. As other
students understand, whether they are in college or high school, backpacks can
weigh a ton! Literally, I weighed mine a minute ago; it weighs 15 lbs. and
that's without my laptop, which I take to class with me most days. Considering
that it gives me a headache to carry my purse around while shopping for
half-an-hour, it’s understandable that carrying a fifteen-plus-pound backpack
around during my six-hour-long school day hurts, too.
That's why I use a backpack with wheels; I only have to lift it when going up or down stairs and when getting in or out of my car. Sometimes I get self-conscious because it rattles and thumps and gets stuck on chair legs. When stuff like that happens, I worry that people see me struggling with this stubborn object and giggle behind my back.
Even if they do (which isn't likely) it's still worth it. For my first few weeks after transferring to Shepherd, I was too embarrassed to use the wheelie backpack. I carried a conventional one, 15 lbs. and all, and boy did it hurt! I ended every day with a whopper of a headache, taking meds at lunch and a nap when I got home. Finally, I gave in to my fiancé’s insistence that I use my wheelie backpack instead. It made a huge difference. Now I often make it through the school day with minimal pain (at least headache-wise) and am able to spend conscious time with my family, fiancé, and homework later in the day.
Yay for wheelie backpacks!
That's why I use a backpack with wheels; I only have to lift it when going up or down stairs and when getting in or out of my car. Sometimes I get self-conscious because it rattles and thumps and gets stuck on chair legs. When stuff like that happens, I worry that people see me struggling with this stubborn object and giggle behind my back.
Even if they do (which isn't likely) it's still worth it. For my first few weeks after transferring to Shepherd, I was too embarrassed to use the wheelie backpack. I carried a conventional one, 15 lbs. and all, and boy did it hurt! I ended every day with a whopper of a headache, taking meds at lunch and a nap when I got home. Finally, I gave in to my fiancé’s insistence that I use my wheelie backpack instead. It made a huge difference. Now I often make it through the school day with minimal pain (at least headache-wise) and am able to spend conscious time with my family, fiancé, and homework later in the day.
Yay for wheelie backpacks!
11/17/11
Cancer Vixen
I just realized how much I have been talking about shoes... I feel a strange connection to Marisa, who constantly focuses on her shoes in the graphic novel Cancer Vixen. And just like she rocks fantastic heels during chemotherapy, I can rock un-fantastic sneakers through Chiari! But maybe with a little less glam. Image:
Amazon. Amazon, 2011. Web. 17 Nov. 2011.
Nike iD
So, anybody can design their own shoes now, thanks to Nike iD! They let you pick the colors, material, and, depending on the shoe, even the kind of cushion in the heel. Since I have yet to find a sneaker that I think would work as a wedding shoe (I want one with good impact-absorption and a white toe so it isn't obvious beneath my white dress) I have started playing with this new DIY (design it yourself) option.
Here are two of my favorites. Can you guess our wedding color?
P.S. Leave some comments, and let me know what you think!
Here are two of my favorites. Can you guess our wedding color?
P.S. Leave some comments, and let me know what you think!
 |
| Nike Shox NZ |
 |
| Nike Air Pegasus+28 |
The Empty Space
I went to Michael's (the arts and crafts store), and Target today; I needed some things in order to keep working on my Christmas gifts. I have since decided that one-o'clock on Thursday afternoons is the ultimate shopping time, and possibly a gift from God! Almost no one else was there at that time, and, as I pulled up in front of Michael's, the most beautiful parking space was waiting for me. It couldn't have been more appealing if it had been covered in chocolate! ( And that's saying a lot.)This empty spot had no blue sign above it with the stylized image of a white, unisex, stick figure sitting aimlessly in a white wheelchair. This was a "normal" spot. It was also the first parking space in the row. I almost peed myself.
I'm not against using parking spaces that are set aside for those with physical ailments. In fact, I use them frequently. But sometimes I get tired of the pointed glances I get as I, a healthy-looking young woman, hang that blue tag on my rear-view mirror and step (apparently healthily) out of my car.
That's why I almost peed myself today. I got the closest spot to the store (meaning I didn't get too bad of a headache from walking) and nobody looked at me like I was an impostor!
It's the little things, right?
I'm not against using parking spaces that are set aside for those with physical ailments. In fact, I use them frequently. But sometimes I get tired of the pointed glances I get as I, a healthy-looking young woman, hang that blue tag on my rear-view mirror and step (apparently healthily) out of my car.
That's why I almost peed myself today. I got the closest spot to the store (meaning I didn't get too bad of a headache from walking) and nobody looked at me like I was an impostor!
It's the little things, right?
11/10/11
Shopping and Shoes
I went shopping today with Jon-Marc. No one was at my house or at his apartment, and we don't hang out alone in private. (We're saving the exciting things for marriage.) Therefore, our only option was to go out. We started at Goodwill and proceeded to the mall (aka one of the most exhausting places on Earth, topped only by the beach and tall buildings without elevators.) We are getting married this July, and I already have a dress. The next step is to schedule a fitting, but before I do that I have to know what shoes I will be wearing, in order for the seamstress to adjust the hem correctly. So every time we go to the mall, we stop by Lady Footlocker, and today was no different.
For Chiarians, shoes are a big factor in the level of one's pain, particularly the pain of headaches. I have traced the root of many bad headaches all the way down to bad shoes. But what makes a shoe good or bad? Its level of impact absorption. After all, it is the impact of walking that hurts: the force that pounds through the feet, into the ankles, up the legs, up the spine, and straight into the skull, as the brain is thrust against it with every step. In order to help prevent headaches (or prevent them from reaching intolerable levels) it is therefore important to find good shoes: ones with extra impact absorption.
In my experience, good impact absorption occurs in two ways: structure and cushion. By structure I mean that there is some built-in shock system that is purposed to absorb impact. Nike Shox are the best example of this, and they are my favorite shoes. :)
With Shox, the "spring system" is actually visable, but it is less obvious with some other shoes. For example, it is less obvious with Nike Air Max.
These are my Nike Air Max. I wear them almost every day. They have great impact absorption, comparable to Nike Shox, which I have found to be the best.
As for cushion, that is self-explanatory. The best way to check a shoe's cushion is to put your thumb inside the heel of the shoe, put your other fingers under the bottom of the heel, and squeeze. Whatever "give" your hand feels there is what your feet, ankles, legs, spine, skull, and brain will be feeling later--so be picky with your shoe purchases.
One easy modification I have discovered when it comes to cushion is insoles. The original insoles in most shoes are removable and can be replaced with new ones; many stores, especially athletic shoe stores, carry insoles that are made to provide extra cushion. I currently use "Spenco PolySorb Cross Trainer" insoles, which I got at Lady Footlocker, but the "Spenco For Her Q-Factor Cushioning Insole" is particularly good, too.
[Spenco PolySorb Cross Trainer]
So what was I doing in Lady Footlocker today? Looking for my wedding shoes. The overwhelming majority of dress shoes, heels, and flats completely lack impact absorption, in both structure and cushion. It is more important to me to feel good than to look good on my wedding day. And besides, my dress will cover 99.5% of the shoe anyway!
Images:
"Red Nike Shox." cheapnikeshoxstore.net. cheapnikeshoxstore.net, 2011. Web. 15 Nov. 2011.
"Spenco PolySorb Cross Trainer." Style Mania. Style Mania, n.d. Web. 11 Nov. 2011.
For Chiarians, shoes are a big factor in the level of one's pain, particularly the pain of headaches. I have traced the root of many bad headaches all the way down to bad shoes. But what makes a shoe good or bad? Its level of impact absorption. After all, it is the impact of walking that hurts: the force that pounds through the feet, into the ankles, up the legs, up the spine, and straight into the skull, as the brain is thrust against it with every step. In order to help prevent headaches (or prevent them from reaching intolerable levels) it is therefore important to find good shoes: ones with extra impact absorption.
In my experience, good impact absorption occurs in two ways: structure and cushion. By structure I mean that there is some built-in shock system that is purposed to absorb impact. Nike Shox are the best example of this, and they are my favorite shoes. :)
With Shox, the "spring system" is actually visable, but it is less obvious with some other shoes. For example, it is less obvious with Nike Air Max.
These are my Nike Air Max. I wear them almost every day. They have great impact absorption, comparable to Nike Shox, which I have found to be the best.
As for cushion, that is self-explanatory. The best way to check a shoe's cushion is to put your thumb inside the heel of the shoe, put your other fingers under the bottom of the heel, and squeeze. Whatever "give" your hand feels there is what your feet, ankles, legs, spine, skull, and brain will be feeling later--so be picky with your shoe purchases.
One easy modification I have discovered when it comes to cushion is insoles. The original insoles in most shoes are removable and can be replaced with new ones; many stores, especially athletic shoe stores, carry insoles that are made to provide extra cushion. I currently use "Spenco PolySorb Cross Trainer" insoles, which I got at Lady Footlocker, but the "Spenco For Her Q-Factor Cushioning Insole" is particularly good, too.
[Spenco PolySorb Cross Trainer]
So what was I doing in Lady Footlocker today? Looking for my wedding shoes. The overwhelming majority of dress shoes, heels, and flats completely lack impact absorption, in both structure and cushion. It is more important to me to feel good than to look good on my wedding day. And besides, my dress will cover 99.5% of the shoe anyway!
Images:
"Red Nike Shox." cheapnikeshoxstore.net. cheapnikeshoxstore.net, 2011. Web. 15 Nov. 2011.
"Spenco PolySorb Cross Trainer." Style Mania. Style Mania, n.d. Web. 11 Nov. 2011.
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