Surgery was scheduled for 8:30am local time. We woke up at 5am -- those of us who needed to wake up anyway; my strategy was to not bother sleeping in the first place and somehow keep what remained of my jangled nerve intact until we arrived at the hospital.
We pulled into the parking lot at 6:30am and were welcomed by a balmy 30 degrees of freeze. On our short walk to the hospital door, Stacey slipped on a piece of plywood covering a rain gutter, but somehow managed to land in the only position you can land in without causing some sort of injury. We were in the right place, but it would have been the wrong time.
We checked in, and 30 minutes later I was lying on the gurney in the pre-op room with nothing on but a hospital gown, yellow booties, and an IV in my arm that would eventually lead to five bathroom runs inside of two hours.
Once I was prepped, Stacey and Roger were allowed into the room, and by 7:30am we were anxiously talking and mentally preparing for the impending surgery. My very determined psycho-somatic cough was still present.
Around this time, roughly an hour before surgery was to begin, one of the nurses informed us that the surgery was postponed until 10am because Dr. Oro had been in surgery all night. I politely requested that they postpone as long as they needed and let him get as much sleep as possible. The last thing you want to see before being injected with happy juice is your surgeon half-awake with razor cuts from shaving.
We filled the next two hours with chatter, magazine reading, and multiple bathroom breaks. Nerves and a small bladder will do this. Still, the nurses seemed surprised, although Stacey and Roger didn't.
At around 9:30am, the anesthesiologist stopped by and explained his role in the operation. A few minutes later Dr. Oro came by and stepped us through the procedure in detail. I signed the consent form, making it official. Neither of them seemed concerned about the psycho-somatic cough, which seemed obvious to everyone but me. Okay okay, I get it.
It was time to go, and the anesthesiologist started the flow of happy juice. I could tell Stacey was worried (tears are hard to hide) but she put on a brave face for my benefit. I remember thanking Roger for coming out, and telling them to drive safe.
Next thing I knew, I was waking up in a fog and saying "I feel nauseous, I have a pounding headache... I feel nauseous, I have a pounding headache...." Whatever they gave me did the trick because I no longer felt nauseous or had a pounding headache.
The rest of the day is pretty foggy, but at some point I was brought into the ICU room (for all I know I was already there), and I have brief images of different nurses and/or doctors asking me questions and attending to me. The ICU team did an excellent job keeping my nausea and pain under control, and at this point all signs were pointing to a successful operation.
Coming up Next: Day 2 - The ICU
Sunday, November 30, 2008
Pre-Op
The next morning, 11/19, I had my pre-op appointment at The Medical Center of Aurora. I already had most of my labs done before I left for Denver, so the only thing remaining was a chest x-ray. This was good, because at this point my cough still hadn't left, and I was becoming more worried that they would either cancel the surgery or I'd cough my stitches off once I emerged from the fog of anesthesia.
I have to say that although the pre-op process took a few hours, it was very organized so no complaints there. Roger was good enough to come along and listen to my cough neuroses, and politely reminded me that he was in no danger of catching my psycho-somatic cough.
Once the labs were done and my anxiety was on THREAT LEVEL: RED, we picked up a late lunch at Panera Bread (great sandwiches, and a generally nice place to relax) and waited to pick up Stace from the airport. Her flight was delayed by 30 minutes (thanks United; are you charging for delays now also?), but we eventually picked her up and brought her back to her new home for the next 8+ days.
Once settled in, we all headed down to the now-famous grill at the hotel (delicious food if your only other option is Sam's Rat Burgers) and Stacey and Roger did their best to keep my mind off of the surgery by reminding me constantly about the surgery. (Okay, they didn't really do that, but it added a little more drama to the blog entry.)
All we had left to do was wait, and wait is what we did. The hours became minutes, the minutes became seconds, and I counted every single one as a lay in bed tossing and turning, waiting for my perma-cough to eventually go away.
Coming up Next: Day 1 - Surgery
I have to say that although the pre-op process took a few hours, it was very organized so no complaints there. Roger was good enough to come along and listen to my cough neuroses, and politely reminded me that he was in no danger of catching my psycho-somatic cough.
Once the labs were done and my anxiety was on THREAT LEVEL: RED, we picked up a late lunch at Panera Bread (great sandwiches, and a generally nice place to relax) and waited to pick up Stace from the airport. Her flight was delayed by 30 minutes (thanks United; are you charging for delays now also?), but we eventually picked her up and brought her back to her new home for the next 8+ days.
Once settled in, we all headed down to the now-famous grill at the hotel (delicious food if your only other option is Sam's Rat Burgers) and Stacey and Roger did their best to keep my mind off of the surgery by reminding me constantly about the surgery. (Okay, they didn't really do that, but it added a little more drama to the blog entry.)
All we had left to do was wait, and wait is what we did. The hours became minutes, the minutes became seconds, and I counted every single one as a lay in bed tossing and turning, waiting for my perma-cough to eventually go away.
Coming up Next: Day 1 - Surgery
Saturday, November 29, 2008
Off to Denver for Surgery
Martin and Roger had both planned to meet me at the airport, but for a number of reasons Martin was unable to make it. Those reasons didn't include a 7-day intensive Madden practice session with MaddenChamp07; at least that's what Martin claims.
Unfortunately Roger missed his connecting flight in Phoenix, for reasons I'll let him explain to avoid any public embarrassment. He was now arriving at 5:30p local time, so I leisurely grabbed some food, read a bit of 'The Yiddish Policeman's Union', and headed out to the shuttle to pick up my car. On my way, it eventually dawned on me that I still needed to get my luggage -- the only luggage left at the baggage terminal.
I checked in, sat down, grabbed a glass of water, and headed back out to pick Roger up at the airport. It turns out that the trip to/from the airport is only fifteen minutes. Tell that to Garmina.
With Roger finally in tow, we headed back to the hotel (where Roger was staying on the pullout couch for a couple days, in case anyone needed clarification), unpacked, and went grocery shopping so Stacey would have some basic foodstuffs when she arrived the next day.
If anyone ever tells you, while you're staying in Aurora, to "just drive down Peoria Street a couple miles..." promptly smack them with a wet sponge, and do otherwise. A couple miles on Peoria Street translates to 30-60 minutes, depending on traffic lights. Roger and I continually tested this theory while trying to find a grocery store, and it held every time. We eventually (by eventually, I mean several hours later) picked up everything we needed and turned in from sheer exhaustion.
Coming up Next: Pre-Op
With Roger finally in tow, we headed back to the hotel (where Roger was staying on the pullout couch for a couple days, in case anyone needed clarification), unpacked, and went grocery shopping so Stacey would have some basic foodstuffs when she arrived the next day.
If anyone ever tells you, while you're staying in Aurora, to "just drive down Peoria Street a couple miles..." promptly smack them with a wet sponge, and do otherwise. A couple miles on Peoria Street translates to 30-60 minutes, depending on traffic lights. Roger and I continually tested this theory while trying to find a grocery store, and it held every time. We eventually (by eventually, I mean several hours later) picked up everything we needed and turned in from sheer exhaustion.
Coming up Next: Pre-Op
Thursday, November 27, 2008
The Doctor is In
In August, I began searching Chiari support groups, blogs, and forums to build a list of the top neurosurgeons in the country specializing in this condition. After factoring in insurance and location, I narrowed this down to three doctors:
Dr. John Oro at The Chiari Care Center in Denver
Dr. Ulrich Batzdorf at UCLA
Dr. Richard Ellenbogen at University of Washington
All three are highly-regarded, but what factored greatly in my decision was a blog I came across called My Life with Chiari Malformation Type I. The author, Jenn Ann, is from the same state as me, had similar symptoms, conducted the same type of search, and ultimately chose Dr. Oro at the Chiari Care Center. She had nothing but great things to say, and after doing some more follow-up, I came to the same conclusion: Dr. Oro was the perfect choice.
Dr. Oro created the Chiari Care Center to focus on treating patients with this condition, and he is a true leader in the field. He had already done an extensive number of decompression surgeries, and even better, my surgery would be 100% covered by my insurance plan.
I immediately set up an appointment to meet with Dr. Oro and his team to determine whether I was a candidate for surgery. I flew to Denver on August 28th, which just happened to be the same day as the Democratic National Convention -- well not just the day of the convention, but the day that Barack Obama was speaking to 800 billion people. The flight, traffic, and hotel were surprisingly less crowded than expected, probably because the entire metro area had already converged on Invesco Field.
My friend Martin, an all-around great guy but with questionable Madden skills, was good enough to meet me in Denver to help calm my nerves before the appointment. We grabbed some dinner, had some coffee, talked about what was involved in the surgery, and managed to get lost once or twice, even with a GPS. If getting lost in a city with a GPS unit while hyped up on coffee and stuffed with pizza isn't enough to keep your mind of a neuro appointment, I don't know what is.
I arrived at The Chiari Care Center's office the next morning. The office had a very relaxed atmosphere, and the entire staff was very professional, hands-on, and attentive. I started things off with several MRIs and CT-scans for Dr. Oro to review later that afternoon. I next headed to the main office, and met with Kimberly Sexton, the nurse practitioner. Finally, that afternoon, I met with Dr. Oro.
He went over my lab results with me in great detail, and answered all of my questions. I was fortunate that I hadn't yet developed a syrinx or any of the other Chiari-related symptoms (difficulty swallowing, etc.), and now that it was clear that The Chiari Care Center was a top-notch, world-class operation, I was ready to proceed.
I set up a surgery date of 10/23, and flew home feeling very good about my decision. My friends Martin and Roger, concerned about my surgery, but more concerned about my psychosomatic tendencies to get myself *out* of surgery, planned to meet Stacey and I in Denver the day we planned to arrive.
As luck would have it, my dependable, "never-say-quit" immune system quit on me, and I developed a very bad head cold and cough 10 days before surgery. I began pumping every nutritional molecule known to humans into my body, but it wasn't having any effect.
It wouldn't matter, because sadly on Sunday 10/19, my wife Stacey's mother Janice Tucker passed away unexpectedly. It was a tremendous blow to the family, but particularly to her daughters Stacey and Jill. Needless to say, the surgery was postponed, and we shifted our focus to working through this difficult family tragedy.
Several emotional weeks later, we decided we should still move forward with the surgery. Jan would have probably agreed to do the same. I called Dr. Oro's office and explained the situation. They were extremely understanding, and we set a new date of 11/20. The plan was for Stacey and I to stay at the hospital from 11/20 to 11/27 while Jill watched our kids. My mom Sharon would plan to come down on 11/27 (Thanksgiving) to help out upon our return home.
The date was set, and now it was just a matter of waiting. Work was as crazy as ever, and -- can you believe it -- I developed ANOTHER cold. A smaller one this time, but a cough that would linger longer than I could imagine. Regardless, I was going to Denver to face this, and if the doctors said it was okay to proceed, we would go through with it.
Coming Up Next: Off to Denver for Surgery
Dr. John Oro at The Chiari Care Center in Denver
Dr. Ulrich Batzdorf at UCLA
Dr. Richard Ellenbogen at University of Washington
All three are highly-regarded, but what factored greatly in my decision was a blog I came across called My Life with Chiari Malformation Type I. The author, Jenn Ann, is from the same state as me, had similar symptoms, conducted the same type of search, and ultimately chose Dr. Oro at the Chiari Care Center. She had nothing but great things to say, and after doing some more follow-up, I came to the same conclusion: Dr. Oro was the perfect choice.
Dr. Oro created the Chiari Care Center to focus on treating patients with this condition, and he is a true leader in the field. He had already done an extensive number of decompression surgeries, and even better, my surgery would be 100% covered by my insurance plan.
I immediately set up an appointment to meet with Dr. Oro and his team to determine whether I was a candidate for surgery. I flew to Denver on August 28th, which just happened to be the same day as the Democratic National Convention -- well not just the day of the convention, but the day that Barack Obama was speaking to 800 billion people. The flight, traffic, and hotel were surprisingly less crowded than expected, probably because the entire metro area had already converged on Invesco Field.
My friend Martin, an all-around great guy but with questionable Madden skills, was good enough to meet me in Denver to help calm my nerves before the appointment. We grabbed some dinner, had some coffee, talked about what was involved in the surgery, and managed to get lost once or twice, even with a GPS. If getting lost in a city with a GPS unit while hyped up on coffee and stuffed with pizza isn't enough to keep your mind of a neuro appointment, I don't know what is.
I arrived at The Chiari Care Center's office the next morning. The office had a very relaxed atmosphere, and the entire staff was very professional, hands-on, and attentive. I started things off with several MRIs and CT-scans for Dr. Oro to review later that afternoon. I next headed to the main office, and met with Kimberly Sexton, the nurse practitioner. Finally, that afternoon, I met with Dr. Oro.
He went over my lab results with me in great detail, and answered all of my questions. I was fortunate that I hadn't yet developed a syrinx or any of the other Chiari-related symptoms (difficulty swallowing, etc.), and now that it was clear that The Chiari Care Center was a top-notch, world-class operation, I was ready to proceed.
I set up a surgery date of 10/23, and flew home feeling very good about my decision. My friends Martin and Roger, concerned about my surgery, but more concerned about my psychosomatic tendencies to get myself *out* of surgery, planned to meet Stacey and I in Denver the day we planned to arrive.
As luck would have it, my dependable, "never-say-quit" immune system quit on me, and I developed a very bad head cold and cough 10 days before surgery. I began pumping every nutritional molecule known to humans into my body, but it wasn't having any effect.
It wouldn't matter, because sadly on Sunday 10/19, my wife Stacey's mother Janice Tucker passed away unexpectedly. It was a tremendous blow to the family, but particularly to her daughters Stacey and Jill. Needless to say, the surgery was postponed, and we shifted our focus to working through this difficult family tragedy.
Several emotional weeks later, we decided we should still move forward with the surgery. Jan would have probably agreed to do the same. I called Dr. Oro's office and explained the situation. They were extremely understanding, and we set a new date of 11/20. The plan was for Stacey and I to stay at the hospital from 11/20 to 11/27 while Jill watched our kids. My mom Sharon would plan to come down on 11/27 (Thanksgiving) to help out upon our return home.
The date was set, and now it was just a matter of waiting. Work was as crazy as ever, and -- can you believe it -- I developed ANOTHER cold. A smaller one this time, but a cough that would linger longer than I could imagine. Regardless, I was going to Denver to face this, and if the doctors said it was okay to proceed, we would go through with it.
Coming Up Next: Off to Denver for Surgery
Wednesday, November 26, 2008
The Search for a Doctor Begins
By mid-summer, my vertigo was getting out of control. Something as simple as lying on the couch would feel like a free ticket on the Matterhorn... great that it was free, but I didn't have the option of getting off.
Never being a fan of rollercoasters, I knew it was time to take action. I had been diagnosed with Chiari but wasn't convinced that the dizziness was related. My next stop would be with a local neurologist, followed by a local ENT.
The neurologist believed that Chiari was the cause, but referred me to a local neurosurgeon to be certain. I had several pre-meeting MRIs taken, met with the neurosurgeon, and we had a good discussion.
He explained that my tonsils were significantly descended into the foramen magnum (past C1, nearly to C2) and surgery was currently the only means to relieve the symptoms. The success rate was around 86%, and there were of course no guarantees. He noted that I didn't yet have a syrinx (a cyst that forms in the spinal cord and can in some cases lead to paralysis), and a surgery sooner than later would reduce the chance of getting one. Not being a fan of syrinxes, I set a date for the decompression -- September 26th.
I returned home feeling good about the discussion. During our conversation, I was comforted by the neurosurgeon's knowledge and responses to questions, and I came away with the impression that he was an expert in his field. I found Stacey in the office, and told her the news -- coincidentally on her birthday (7/30 for those who need to update their address books). In hindsight, this isn't the same as bringing home flowers. Lesson learned.
Stacey agreed to go along with my decision, but as the days went by, my tendency to over-research things took hold and I began culling newsgroups and blogs for any information about the neurosurgeon and facility. I discovered that he was a well-respected pediatric neurosurgeon and was liked by patients, however I also learned that a decompression for children and adults is significantly different. I put together a new list of questions to ask, and set up a follow-up appointment for Stacey and I to discuss with him.
In the meantime, I saw an ENT to be absolutely, 100%, Boston-will-never-win-the-world-series certain that there were no ear imbalance issues. The ENT quickly confirmed that my hearing was fine, my inner ear anatomy was fine, my humor wasn't so fine, and "if it looks like a duck and quacks like a duck, it must be Chiari."
A few weeks before my scheduled surgery, Stacey and I took time off work for our follow-up meeting. We spent 45 minutes in the waiting room, another 45 minutes in the patient room, and finally, the doctor came in. Ah, but wait... it wasn't the doctor, but his P.A. It was late in the day, and our best guess was that the doctor was still tied up with a patient so his assistant came in to help answer questions.
We were beyond irritated, so the best approach here would have been for her to walk in, explain her role, explain why the doctor couldn't see us, explain why we were left waiting for nearly two hours, and answer all our questions to our satisfaction. She proceeded to do exactly none of that.
When asked about recovery, she went so far as to suggest I spend my time in Tahoe because "what better place to recover than hanging out in Tahoe". Yes indeed, what better place to recover from brain surgery than watching other people enjoy things from inside a room.
Nearly every question asked was either answered condescendingly, or not at all. At one point when I asked whether there were risks in waiting, she explained that my "tonsils could be lopped off if I was in a car crash." I knew only two things at this point: the drive home would be exceptionally slow, and I had lost confidence in having my surgery done here.
I don't doubt that the neurosurgeon and facility would have ultimately been fine to use, but in these cases you need to go with your gut, and my gut told me that this was no longer going to be a fit. Although it was going to be a logistical pain to have surgery out of my local area, it was time to expand the search.
Coming up Next: The Doctor is In
Never being a fan of rollercoasters, I knew it was time to take action. I had been diagnosed with Chiari but wasn't convinced that the dizziness was related. My next stop would be with a local neurologist, followed by a local ENT.
The neurologist believed that Chiari was the cause, but referred me to a local neurosurgeon to be certain. I had several pre-meeting MRIs taken, met with the neurosurgeon, and we had a good discussion.
He explained that my tonsils were significantly descended into the foramen magnum (past C1, nearly to C2) and surgery was currently the only means to relieve the symptoms. The success rate was around 86%, and there were of course no guarantees. He noted that I didn't yet have a syrinx (a cyst that forms in the spinal cord and can in some cases lead to paralysis), and a surgery sooner than later would reduce the chance of getting one. Not being a fan of syrinxes, I set a date for the decompression -- September 26th.
I returned home feeling good about the discussion. During our conversation, I was comforted by the neurosurgeon's knowledge and responses to questions, and I came away with the impression that he was an expert in his field. I found Stacey in the office, and told her the news -- coincidentally on her birthday (7/30 for those who need to update their address books). In hindsight, this isn't the same as bringing home flowers. Lesson learned.
Stacey agreed to go along with my decision, but as the days went by, my tendency to over-research things took hold and I began culling newsgroups and blogs for any information about the neurosurgeon and facility. I discovered that he was a well-respected pediatric neurosurgeon and was liked by patients, however I also learned that a decompression for children and adults is significantly different. I put together a new list of questions to ask, and set up a follow-up appointment for Stacey and I to discuss with him.
In the meantime, I saw an ENT to be absolutely, 100%, Boston-will-never-win-the-world-series certain that there were no ear imbalance issues. The ENT quickly confirmed that my hearing was fine, my inner ear anatomy was fine, my humor wasn't so fine, and "if it looks like a duck and quacks like a duck, it must be Chiari."
A few weeks before my scheduled surgery, Stacey and I took time off work for our follow-up meeting. We spent 45 minutes in the waiting room, another 45 minutes in the patient room, and finally, the doctor came in. Ah, but wait... it wasn't the doctor, but his P.A. It was late in the day, and our best guess was that the doctor was still tied up with a patient so his assistant came in to help answer questions.
We were beyond irritated, so the best approach here would have been for her to walk in, explain her role, explain why the doctor couldn't see us, explain why we were left waiting for nearly two hours, and answer all our questions to our satisfaction. She proceeded to do exactly none of that.
When asked about recovery, she went so far as to suggest I spend my time in Tahoe because "what better place to recover than hanging out in Tahoe". Yes indeed, what better place to recover from brain surgery than watching other people enjoy things from inside a room.
Nearly every question asked was either answered condescendingly, or not at all. At one point when I asked whether there were risks in waiting, she explained that my "tonsils could be lopped off if I was in a car crash." I knew only two things at this point: the drive home would be exceptionally slow, and I had lost confidence in having my surgery done here.
I don't doubt that the neurosurgeon and facility would have ultimately been fine to use, but in these cases you need to go with your gut, and my gut told me that this was no longer going to be a fit. Although it was going to be a logistical pain to have surgery out of my local area, it was time to expand the search.
Coming up Next: The Doctor is In
Monday, November 24, 2008
Getting the Diagnosis
It's one thing to know what Chiari is; it's an entirely different thing to get an accurate diagnosis. It usually takes Chiari patients several years before they're correctly diagnosed as having ACM1. (This, coincidentally, roughly correlates to the number of years it takes the 49ers to realize their mistakes; and Niners fans don't lose hope. There's always, umm... next year?)
I was first unknowingly diagnosed in 2001. I'd been to several doctors about my headaches but wasn't getting anywhere. I finally had an MRI done by my PCP in order to rule out an aneuryism. The results were negative -- which was good -- but I still didn't have any answers.
I started researching different types of headaches, and came to the conclusion that mine were similar to something described as "cough headaches", brought on my coughing or straining. This insight didn't even mention Chiari, but it gave me something to go on.
About five years later, my sister-in-law Jill found a headache specialist in Sacramento, and I brought my aching head, along with my MRIs, to his office. He looked at the scans, then at the summary sheet, and after about 30 seconds said "You have Chiari Malformation."
Great! I thought... at least I know what this is. So I asked him how he found out. It was described RIGHT THERE IN THE SUMMARY SHEET. So my PCP at the time had the information all along, but didn't bother to relay it (or maybe wasn't even aware of the condition, which is probably more likely given how little people know of this thing).
The neurologist described the surgery, but because I had two young kids at home and was only experiencing headaches, I opted against it.
Another year went by, and I was beginning to have vertigo-like symptoms. By the the summer of 2008, they were so bad that just leaning my head backward to look up would make the room spin. If I ended up with a cold or coughing attack, I was better off laying in bed until it cleared up.
At this point I decided surgery was going to be necessary, so I began the search for the right doctor to have this condition taken care of, hopefully once and for all.
Coming up Next: The Search for a Doctor Begins
I was first unknowingly diagnosed in 2001. I'd been to several doctors about my headaches but wasn't getting anywhere. I finally had an MRI done by my PCP in order to rule out an aneuryism. The results were negative -- which was good -- but I still didn't have any answers.
I started researching different types of headaches, and came to the conclusion that mine were similar to something described as "cough headaches", brought on my coughing or straining. This insight didn't even mention Chiari, but it gave me something to go on.
About five years later, my sister-in-law Jill found a headache specialist in Sacramento, and I brought my aching head, along with my MRIs, to his office. He looked at the scans, then at the summary sheet, and after about 30 seconds said "You have Chiari Malformation."
Great! I thought... at least I know what this is. So I asked him how he found out. It was described RIGHT THERE IN THE SUMMARY SHEET. So my PCP at the time had the information all along, but didn't bother to relay it (or maybe wasn't even aware of the condition, which is probably more likely given how little people know of this thing).
The neurologist described the surgery, but because I had two young kids at home and was only experiencing headaches, I opted against it.
Another year went by, and I was beginning to have vertigo-like symptoms. By the the summer of 2008, they were so bad that just leaning my head backward to look up would make the room spin. If I ended up with a cold or coughing attack, I was better off laying in bed until it cleared up.
At this point I decided surgery was going to be necessary, so I began the search for the right doctor to have this condition taken care of, hopefully once and for all.
Coming up Next: The Search for a Doctor Begins
Sunday, November 23, 2008
First, A Little History
I have Chiari Malformation Type I, and recently underwent a posterior fossa decompression to alleviate and/or reduce the symptoms associated with this condition. I'm now less than a week into recovery, and wanted to put together this blog, or online journal (bjournal?) to keep everyone up-to-date on the surgery and recovery.
Let's Begin at the Beginning
Before delving into my personal relationship with Chiari, I wanted to give an overview of the condition itself. You can look it up on Wikipedia, and here's what it will tell you:
Nearly everyone who has a brain (I'm looking at you, Joe the Plumber!) also has brain tissue called the cerebellar tonsils attached to the bottom of the brain (the cerebellum). Directly below the tonsils is an open space (the foramen magnum) where the spinal cord meets the brain. For normal people, cerebral spinal fluid (CSF) flows freely between the spinal cord area and the brain area, acting as a cushion between the brain and skull, serving an immunological purpose, and generally making for a happy, headache-free existence.
For the estimated 400,000 people (roughly 1 in 1000) in the United States who are lucky enough to have this condition (lucky as in "Hey, I was just hit in the knee with a horseshoe", not "Hey, I just won $100"), things are decidedly not happy or headache-free. The cerebellar tonsils extend down into the foramen magnum and act like a cork, reducing or stopping the flow of CSF between the spinal column and the brain.
The most common symptoms are intense, stabbing, pounding, gut-wrenching headaches at the back of the skull, and these are often associated with dizziness / vertigo-like symptoms. These ingredients make a nice dish called nausea, which isn't all that tasty and you won't be wanting seconds.
Fortunately for most of you, this condition is congenital (Ron, stop laughing and look it up), and although not everyone who has ACM1 will necessarily have symptoms, for those who do, well... it sucks.
Coming Up Next: Getting the Diagnosis
Let's Begin at the Beginning
Before delving into my personal relationship with Chiari, I wanted to give an overview of the condition itself. You can look it up on Wikipedia, and here's what it will tell you:
"Chiari-Malformation is a malformation of the brain. It consists of a downward displacement of the cerebellar tonsils and the medulla through the foramen magnum, sometimes causing hydrocephalus as a result of obstruction of CSF outflow."Wow, thanks Wikipedia! If only i knew Latin. What's really going on here, insofar as my understanding goes, is this:
Nearly everyone who has a brain (I'm looking at you, Joe the Plumber!) also has brain tissue called the cerebellar tonsils attached to the bottom of the brain (the cerebellum). Directly below the tonsils is an open space (the foramen magnum) where the spinal cord meets the brain. For normal people, cerebral spinal fluid (CSF) flows freely between the spinal cord area and the brain area, acting as a cushion between the brain and skull, serving an immunological purpose, and generally making for a happy, headache-free existence.
For the estimated 400,000 people (roughly 1 in 1000) in the United States who are lucky enough to have this condition (lucky as in "Hey, I was just hit in the knee with a horseshoe", not "Hey, I just won $100"), things are decidedly not happy or headache-free. The cerebellar tonsils extend down into the foramen magnum and act like a cork, reducing or stopping the flow of CSF between the spinal column and the brain.
The most common symptoms are intense, stabbing, pounding, gut-wrenching headaches at the back of the skull, and these are often associated with dizziness / vertigo-like symptoms. These ingredients make a nice dish called nausea, which isn't all that tasty and you won't be wanting seconds.
Fortunately for most of you, this condition is congenital (Ron, stop laughing and look it up), and although not everyone who has ACM1 will necessarily have symptoms, for those who do, well... it sucks.
Coming Up Next: Getting the Diagnosis
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