And...for those of you who think I'm about to spill news of a pregnancy...well...get that little thought right out of your minds!
So, here's the big announcement: I'm having brain surgery! [Doesn't that sound like fun?]
[Excerpts from National Institute of Neurological Disorders and Stroke]
What are Chiari malformations?
Chiari malformations (CMs) are
structural defects in the cerebellum, the part of the brain that
controls balance. Normally
the cerebellum and parts of the
brain stem sit in an indented space at the lower rear of the skull,
above the foramen magnum
(a funnel-like opening to the spinal
canal). When part of the cerebellum is located below the foramen
magnum, it is called
a Chiari malformation.
CMs may develop when the bony space is smaller than normal, causing the cerebellum and brain stem to be pushed downward into the foramen magnum and into the upper spinal canal. The resulting pressure on the cerebellum and brain stem may affect functions controlled by these areas and block the flow of cerebrospinal fluid (CSF)— the clear liquid that surrounds and cushions the brain and spinal cord—to and from the brain.
How are they classified?
Type I involves the extension of the cerebellar tonsils (the lower part of the cerebellum) into the foramen magnum, without involving the brain stem. Normally, only the spinal cord passes through this opening. Type I—which may not cause symptoms—is the most common form of CM and is usually first noticed in adolescence or adulthood, often by accident during an examination for another condition. Type I is the only type of CM that can be acquired.
[End excerpts]
I have Type I Chiari malformation. I was first diagnosed about 12 years ago after a bout with severe occipital migraines with vision impairment. It is still unknown whether the CM was actually to blame for those migraines, which resolved after several rounds of trigger-point injections into the occipital area of my head.
Fast-forward to July 2012.
I crawl into bed one night, close my eyes and suddenly feel as though I'm riding the Gravitron and I can't make it stop. I spend the next several days bouncing in and out of dizzy whirlwinds that don't actually exist. Within a few more days, I notice that it feels like my heart is skipping beats. Basically, I feel: beat---beat---beat---pause------------------beat-beat-beat---beat---beat. This heart thing always happens when I'm dizzy but I can be dizzy and not notice the heart thing. Did that make sense? Anyway, I decided to see the doctor who refers me to a Cardiologist. Diagnosis: Vertigo and Premature Ventricular Contractions. Both "no big deal."
November rolls around and I'm still dizzy a good part of the time and I've been having this niggling little headache. Not like, "I need a tylenol" headache or anything, just more of a "can my head just stop hurting already?!" headache. One day late in the month, I drive over to see my mom at work on my lunch break. 5.0 miles away. I have made the drive hundreds of times over the 14 years I've had a drivers' license. I make 3 wrong turns trying to return to work. At each point, nothing - NOTHING - in my surroundings seems familiar. I finally pull over into a parking lot and use the GPS on my phone to lead me back to work. I would go on to experience several more instances of geographical confusion; eventually using GPS to drive pretty much anywhere.
In January, I make a doctor's appointment for a complete physical. My PCP refers me to a neurologist in Raleigh. Over the next several weeks, I experience lots of testing:
I have a follow-up with the Neurologist who ordered all those test & made all those decisions. She makes me feel like a hypochondriac and tries to push pills down my throat. At the insistence of a friend at work, I sought a referral for a second opinion.
Somewhere along in this mix, I start having difficulties with "word finding" - I struggle to find the words I'm looking for, or sometimes just say the wrong thing altogether.
Enter: Dr. Justin Mhoon, MD, Chair of the Neurology Division at Duke's Department of Neurology. Dr. Mhoon examines me, spends about 35 minutes talking to me, and orders an MRI with SINE study. This test takes approximately 2 hours. It is an MRI of my head, brain, c-spine and t-spine, with a test to determine the flow of spinal fluid in and around those areas scanned. Results: 1. Findings of Chiari type I malformation with approximately 1.1 cm cerebellar tonsillar ectopy. CSF flow study demonstrates diminished flow posterior to the cerebellum and within the distal jugular system. No cord syrinx is identified.
Dr. Mhoon refers me to a Duke Neurosurgeon and an ENT. After a complete ENT workup that was pointless [Yes, Ms. Hall, you do have a confirmed 45% loss of vestibular function, however, it appears that your brain has already compensated for that loss of function and therapy would not be beneficial to you], I had a consult with Dr. Bagley, Director of Neurosurgery for Duke.
And, sooo, I say all of that to say this:
Sometimes I don't feel well. Sometimes the room is spinning around me. Sometimes I need to use my GPS to drive home from work. Sometimes I really just need to hide and take a nap. Sometimes I just need you to pray for me to have a better day. Sometimes I stumble. Sometimes I catch myself and sometimes I even fall. Sometimes I call the microwave a dishwasher and the can opener a toaster. Sometimes I get mad that you drank all the milk when we're out of bread. Sometimes I'll ask you to put my purse in the sink when there isn't a sink in sight. Sometimes I will forget things that I did or said. Sometimes I will feel like I'm choking or can't get enough air even when there's nothing wrong. Sometimes I won't be able to pick up that paperclip or peel that sticker off my apple. Sometimes it will take all of my energy just to lift my arms.
Please don't judge me. Over the next few months, I will progressively get worse as I have since this time a year ago; so if I say something stupid to you, please just smile and nod like it made perfect sense. And, please remember me in your prayers as December approaches. Surgery is scheduled for December 2 at Duke.
Thank you.
CMs may develop when the bony space is smaller than normal, causing the cerebellum and brain stem to be pushed downward into the foramen magnum and into the upper spinal canal. The resulting pressure on the cerebellum and brain stem may affect functions controlled by these areas and block the flow of cerebrospinal fluid (CSF)— the clear liquid that surrounds and cushions the brain and spinal cord—to and from the brain.
How are they classified?
Type I involves the extension of the cerebellar tonsils (the lower part of the cerebellum) into the foramen magnum, without involving the brain stem. Normally, only the spinal cord passes through this opening. Type I—which may not cause symptoms—is the most common form of CM and is usually first noticed in adolescence or adulthood, often by accident during an examination for another condition. Type I is the only type of CM that can be acquired.
[End excerpts]
I have Type I Chiari malformation. I was first diagnosed about 12 years ago after a bout with severe occipital migraines with vision impairment. It is still unknown whether the CM was actually to blame for those migraines, which resolved after several rounds of trigger-point injections into the occipital area of my head.
Fast-forward to July 2012.
I crawl into bed one night, close my eyes and suddenly feel as though I'm riding the Gravitron and I can't make it stop. I spend the next several days bouncing in and out of dizzy whirlwinds that don't actually exist. Within a few more days, I notice that it feels like my heart is skipping beats. Basically, I feel: beat---beat---beat---pause------------------beat-beat-beat---beat---beat. This heart thing always happens when I'm dizzy but I can be dizzy and not notice the heart thing. Did that make sense? Anyway, I decided to see the doctor who refers me to a Cardiologist. Diagnosis: Vertigo and Premature Ventricular Contractions. Both "no big deal."
November rolls around and I'm still dizzy a good part of the time and I've been having this niggling little headache. Not like, "I need a tylenol" headache or anything, just more of a "can my head just stop hurting already?!" headache. One day late in the month, I drive over to see my mom at work on my lunch break. 5.0 miles away. I have made the drive hundreds of times over the 14 years I've had a drivers' license. I make 3 wrong turns trying to return to work. At each point, nothing - NOTHING - in my surroundings seems familiar. I finally pull over into a parking lot and use the GPS on my phone to lead me back to work. I would go on to experience several more instances of geographical confusion; eventually using GPS to drive pretty much anywhere.
In January, I make a doctor's appointment for a complete physical. My PCP refers me to a neurologist in Raleigh. Over the next several weeks, I experience lots of testing:
- MRI: Confirmed Chiari Type I. It is this Neurologist's opinion that Chiari is asymptomatic.
- VNG: Diagnosed with 45% Vestibular Loss of Function in left ear. - This Neurologist thinks this is to blame for the dizziness. Prescribes Vestibular Therapy.
- Sleep Study: Diagnosed with sleep apnea with an AHI of 65. This Neurologist thinks this is to blame for fatigue, headaches and confusion. Prescribes CPAP.
I have a follow-up with the Neurologist who ordered all those test & made all those decisions. She makes me feel like a hypochondriac and tries to push pills down my throat. At the insistence of a friend at work, I sought a referral for a second opinion.
Somewhere along in this mix, I start having difficulties with "word finding" - I struggle to find the words I'm looking for, or sometimes just say the wrong thing altogether.
Enter: Dr. Justin Mhoon, MD, Chair of the Neurology Division at Duke's Department of Neurology. Dr. Mhoon examines me, spends about 35 minutes talking to me, and orders an MRI with SINE study. This test takes approximately 2 hours. It is an MRI of my head, brain, c-spine and t-spine, with a test to determine the flow of spinal fluid in and around those areas scanned. Results: 1. Findings of Chiari type I malformation with approximately 1.1 cm cerebellar tonsillar ectopy. CSF flow study demonstrates diminished flow posterior to the cerebellum and within the distal jugular system. No cord syrinx is identified.
Dr. Mhoon refers me to a Duke Neurosurgeon and an ENT. After a complete ENT workup that was pointless [Yes, Ms. Hall, you do have a confirmed 45% loss of vestibular function, however, it appears that your brain has already compensated for that loss of function and therapy would not be beneficial to you], I had a consult with Dr. Bagley, Director of Neurosurgery for Duke.
And, sooo, I say all of that to say this:
Sometimes I don't feel well. Sometimes the room is spinning around me. Sometimes I need to use my GPS to drive home from work. Sometimes I really just need to hide and take a nap. Sometimes I just need you to pray for me to have a better day. Sometimes I stumble. Sometimes I catch myself and sometimes I even fall. Sometimes I call the microwave a dishwasher and the can opener a toaster. Sometimes I get mad that you drank all the milk when we're out of bread. Sometimes I'll ask you to put my purse in the sink when there isn't a sink in sight. Sometimes I will forget things that I did or said. Sometimes I will feel like I'm choking or can't get enough air even when there's nothing wrong. Sometimes I won't be able to pick up that paperclip or peel that sticker off my apple. Sometimes it will take all of my energy just to lift my arms.
Please don't judge me. Over the next few months, I will progressively get worse as I have since this time a year ago; so if I say something stupid to you, please just smile and nod like it made perfect sense. And, please remember me in your prayers as December approaches. Surgery is scheduled for December 2 at Duke.
Thank you.
