(Editor's Note: Sorry for the long delay in blog updates! Although entirely unrelated to my recovery, it's been a hectic and at times difficult end-of-month.)
Okay... now where were we? Ah yes, our trip home.
We were scheduled to fly home on Friday, November 28th, the day after Thanksgiving. After some breakfast, we spent the morning packing up eight days worth of luggage and memories. Luggage is heavier and bulkier, however, and takes longer to pack.
I had arrived in Denver with one large suitcase, a backpack, and a laptop. I had also arrived with the ability to lift things. As we were packing, however, it became clear that we had added to that list Stacey's suitcase, backpack, various odds-and-ends, and a brand new, fresh incision on the back of my neck that came with the warning that I was not to lift anything heavier than a gallon of milk. As we hadn't planned on flying home with a gallon of milk, this severely limited my contribution, and correspondingly resulted in the first of Stacey's many valiant efforts on my behalf (which have already won her the '2009 Wife of the Year Award').
After the luggage was packed, I shuffled along with my wife as every piece of luggage was lugged (hence the name) from the hotel room down to the car. I helplessly watched her partake in this activity as I'm sure onlookers pondered why she was with this skullcap-wearing deadbeat (that's me).
When we were finally loaded up and checked out of the hotel, we drove to the car rental return, and once again I swallowed my pride from the sidelines as Stacey pulled everything out of the rental and then onto the shuttle. I ignored any (real or imagined) furtive glances from other passengers.
When the shuttle dropped us off at the airport, my wife once again hauled our entire week's supply of belongings through the airport into the near mile-long line at the ticket counter. As she meandered through the maze-like line that would give any Disneyland ride a run for its money, I sat despondently on a bench, away from the action, waiting for my cue to skulk up to the ticket counter and check-in. At this point I thought, and I'm sure you're thinking too, that my self-respect had been entirely depleted. Oh no. No, not quite.
We had previously arranged for a wheelchair to cart me around, which sounded like a great idea at the time, but by now I was feeling so emasculated that I wasn't so sure I wanted it. Stacey insisted, and I was in no position to argue. After checking in the two largest bags, we received our tickets and were directed around the corner to a small room, where I was given both a wheelchair and a designated wheelchair pusher, both courtesy of the airport. Stacey was given approximately two miles of Denver airport to traverse with our remaining luggage in tow.
The good news is that with a wheelchair, you're given special (read: quick) access through the security terminal. No need to wait in long lines, which was a boon. (I need to briefly thank Jenn for giving me this advice. In hindsight it was a real timesaver!) The bad news is that the Denver airport is large, and my wife -- who was probably very tired of carrying things by now -- still needed to walk much of it, although she refused to complain.
After what seemed like a fairly long time, we made it to the terminal, and after boarding the plane, we had a pleasant flight (worth the $39 Economy Plus upgrade) home.
I'll spare you the details, but suffice it to say that getting off the plane in Sacramento and to our car was virtually the same experience as what happened in Denver, wheelchair included. Thankfully Sacramento International is roughly 1/10th the size of the Denver Airport (which could probably incorporate as its own city if it wanted to). Once we were in our car, we could finally breathe easy... we'd be home in less than thirty minutes.
I'll repeat in case I haven't said it enough -- Stacey was absolutely amazing on this trip. In addition to everything else, she managed to drag five bags (2 large suitcases, a backpack, and two carry-ons) onto two car rental shuttles, through two airports, and in and out of two cars while I glided along on four wheels with ne'er a care in the world. She did everything to ensure that nothing would jeopardize my condition, and I simply could not have done this without her.
Coming up Next: Home at Last
Wednesday, December 17, 2008
Friday, December 12, 2008
The Recovery Ward, Part Deux
Tue early morning - Wed 5:30p
When I was re-admitted, I was given a new room. This one was set up differently from the others; the two beds faced each other (each with curtains), and my previous concern about having a roommate assigned was ratcheted up a notch or two. Once again, I bucked the odds and entire room remained roommate free. Well, sort of.
We arrived pretty early in the morning, and had been through a rough patch down in the emergency room. Stacey was with me, and the nurses went out of their way to wheel in a reclining chair for her to sleep in. They didn't have to do this, especially given that visiting hours were technically over (or hadn't yet begun), and it was greatly appreciated. One more reason why the staff's performance far exceeded my expectations.
Based on my symptoms and some early lab results, it looked like I might have an infection, so I was hooked to another IV for a few rounds of antibiotics.
Let me briefly say something about IVs. How quickly one forgets the sheer enjoyment of having an IV placed in one's arm. I was reminded of that sheer enjoyment multiple times, as over the course of my second stay my IVs kept failing. I ultimately went through four more IVs before being discharged, with both arms having the privilege of partaking in this event.
The problem with IVs is that when they're hooked up to something, that something is typically some sort of fluid dripping into your body at a slow, steady rate. That fluid, once inside, combined with other fluid, eventually needs to find its way back out. Getting that fluid back out, when hooked up to an IV, requires the assistance of a nurse. I felt like I was clicking the "nurse buzzer" every two hours to get up and use the bathroom. I'm sure it's common, but I couldn't help feeling like a major pain in the rear.
So back to the problem at hand. They were doing a blood culture to confirm that my body was fighting an infection, or to determine whether I had an infection in the first place (I'm still lost on this part). Either way, what we wanted to hear was that the results were negative. The problem was that we wouldn't get the results until Wednesday evening, and our flight was Thursday morning.
By Wednesday midday, we had to decide whether to hope for good news and squeeze out a rush trip to the airport, or just reschedule our flight, our hotel, and our car. We chose the latter, and spent 30 minutes getting everything arranged. Within the next 60 minutes, the PA who had been checking in on me informed us that everything looked good and we'd probably be discharged in the next few hours. Of all the times NOT to procrastinate!
The good news was that we'd get a quiet relaxing day at the hotel and plenty of time to get organized. The bad news was that it came with sticker shock.
Over the next couple hours, we were visited by several others, including Dr. Oro's nurse practitioner Kimberly -- who was consistently wonderful and offered encouragement at every step -- and Dr. Oro, who was also fantastic, and concluded that things had gone well, I was in good working order, and we were okay to leave.
We stuck around long enough to get one more free meal which Stacey ordered for me (meatloaf, not pancakes), and we were discharged for the second time. I promised I would not be back again, Stacey again pulled the Jeep up to the exit, and I again took the wheelchair trip through the corridors and down the elevator to my ride waiting outside.
We arrived back to the hotel, and from what I recall, I more or less crashed. The next day was Thanksgiving, and Stacey made a delicious dinner for us. Unfortunately I wasn't feeling 100% and turned in early, but the next morning (Friday) I was back to normal (or as normal as you would feel with 20+ staples and Percocet flowing through you), and we were ready to get home.
Coming up Next: The Airport
When I was re-admitted, I was given a new room. This one was set up differently from the others; the two beds faced each other (each with curtains), and my previous concern about having a roommate assigned was ratcheted up a notch or two. Once again, I bucked the odds and entire room remained roommate free. Well, sort of.
We arrived pretty early in the morning, and had been through a rough patch down in the emergency room. Stacey was with me, and the nurses went out of their way to wheel in a reclining chair for her to sleep in. They didn't have to do this, especially given that visiting hours were technically over (or hadn't yet begun), and it was greatly appreciated. One more reason why the staff's performance far exceeded my expectations.
Based on my symptoms and some early lab results, it looked like I might have an infection, so I was hooked to another IV for a few rounds of antibiotics.
Let me briefly say something about IVs. How quickly one forgets the sheer enjoyment of having an IV placed in one's arm. I was reminded of that sheer enjoyment multiple times, as over the course of my second stay my IVs kept failing. I ultimately went through four more IVs before being discharged, with both arms having the privilege of partaking in this event.
The problem with IVs is that when they're hooked up to something, that something is typically some sort of fluid dripping into your body at a slow, steady rate. That fluid, once inside, combined with other fluid, eventually needs to find its way back out. Getting that fluid back out, when hooked up to an IV, requires the assistance of a nurse. I felt like I was clicking the "nurse buzzer" every two hours to get up and use the bathroom. I'm sure it's common, but I couldn't help feeling like a major pain in the rear.
So back to the problem at hand. They were doing a blood culture to confirm that my body was fighting an infection, or to determine whether I had an infection in the first place (I'm still lost on this part). Either way, what we wanted to hear was that the results were negative. The problem was that we wouldn't get the results until Wednesday evening, and our flight was Thursday morning.
By Wednesday midday, we had to decide whether to hope for good news and squeeze out a rush trip to the airport, or just reschedule our flight, our hotel, and our car. We chose the latter, and spent 30 minutes getting everything arranged. Within the next 60 minutes, the PA who had been checking in on me informed us that everything looked good and we'd probably be discharged in the next few hours. Of all the times NOT to procrastinate!
The good news was that we'd get a quiet relaxing day at the hotel and plenty of time to get organized. The bad news was that it came with sticker shock.
Over the next couple hours, we were visited by several others, including Dr. Oro's nurse practitioner Kimberly -- who was consistently wonderful and offered encouragement at every step -- and Dr. Oro, who was also fantastic, and concluded that things had gone well, I was in good working order, and we were okay to leave.
We stuck around long enough to get one more free meal which Stacey ordered for me (meatloaf, not pancakes), and we were discharged for the second time. I promised I would not be back again, Stacey again pulled the Jeep up to the exit, and I again took the wheelchair trip through the corridors and down the elevator to my ride waiting outside.
We arrived back to the hotel, and from what I recall, I more or less crashed. The next day was Thanksgiving, and Stacey made a delicious dinner for us. Unfortunately I wasn't feeling 100% and turned in early, but the next morning (Friday) I was back to normal (or as normal as you would feel with 20+ staples and Percocet flowing through you), and we were ready to get home.
Coming up Next: The Airport
You Have GOT to be Kidding Me
I'll start out by saying that upon our return to the hotel, Stacey became super-wife. Not that she wasn't already, but she took care of EVERYTHING. We pulled into the hotel parking lot and parked the Jeep. Stacey helped me into the hotel and up to our room. We turned on the Niners game (what timing!), and while I sat on the couch and watched my favorite team being dismantled for the fifth time in as many weeks, Stacey transferred our belongings from the car to our new temporary home.
It felt good to be back at the hotel. No more pancakes, no more IVs, no more wondering if the person being wheeled down the hall complaining about the pain in his shoulder was going to be my roommate for the next 48 hours... what more could a person wish for?
My wound seemed to be healing nicely. So nicely, that we opted to take a snapshot of it to share with the world:
A stitch in time saves nine...
I was on a regular cycle of meds, and there was no pain to speak of. After a light lunch/dinner made by my wonderful wife, I opted to turn in early and get some rest. I wasn't sleeping well, and eventually woke up in a cold sweat and had the chills.
Stacey took my temperature, several times, and the range was 102 to 103.5. Panic mode was setting in, and Stacey called the doctor's office immediately. I didn't want to go back to the hospital, but I wasn't really in any mood to argue. The doctor instructed me to take some Tylenol to reduce the fever; if that didn't work in the next 60 minutes, I needed to get to the emergency room.
Three cheers for Tylenol! The fever broke in the next 45 minutes, and with that, so did any desire to stay awake. I went back to bed and snoozed through the night.
I woke the next day (Monday) feeling fine. Stacey kept me on a regular routine for medicine, meals, exercise, and naps, and I was looking forward to several days of quiet to aid my recovery. In between the moments of quiet, one can't underestimate the healing effects of surfing the internet. Those healing effects were limited to 15 ergonomic minutes every six hours:
Who needs expensive laptop lifters?
Later that evening, Stacey thought I might want to get out of the room, so we decided to treat ourselves to a light dinner at the always-empty grill downstairs. In hindsight, I should have had what Stacey had. Or more to the point, I shouldn't have had the Turkey Club. Of course, I didn't know that until later.
Later was now here, and I was not feeling as comfortable as I would have liked in the abdominal region. I chalked the pain up to constipation (I know, too much information, but it's relevant), and requested some pharmacy product to alleviate said symptoms.
My wonderful wife, yet again, went on a late run to the store to pick up something to hopefully reduce the bloatedness. By the time she returned, the pain was becoming unbearable, and I perhaps went overboard in trying to remedy this.
I'll keep the graphic detail to a minimum, but lets just say the contents of my stomach decided they weren't altogether pleased with being in me, and having two paths of exit, decided to partake in not one or the other, but both.
After 20 minutes of this, combined with the fever event from the previous night, Stacey decided I needed to go to the emergency room. Once again, I did not want to return to the hospital, but I lost that battle and by 11pm we were pulling into the emergency parking lot.
My emergency room experience started off, and ended, 180 degrees from my experience on the ICU and recovery wards. To begin with, they had apparently little concern for the guy who had just shuffled in, pale, weak, and with a complete lack of focus and energy (if you guessed 'Eric', you win!).
After my urgent request for and speedwalk to the nearest bathroom, they showed that same lack of concern for me, as I sat down and heaved uncontrollably into the nearest garbage can.
When I was finally checked-in, the nurse started me off on an IV. Now there are many places you can put an IV, but the one place not generally recommended is that bendy part between your forearm and bicep. Why? Because if you move your arm from any position past "straight", the needle digs in, and it HURTS. It should come as no surprise then, that the emergency nurse chose precisely that place to put the IV.
While I was being fed IV juice, the nurse told Stacey that my symptoms presented the same as someone who was having withdrawals from pain killers. Yes... I'm also presenting as someone who JUST HAD BRAIN SURGERY and you may shockingly not have noticed, but look at the giant zipper in the back of my head. That's Clue Number One.
Eventually the emergency doctor came in (who was nice), and when she found out I was a patient of Dr. Oro's, things changed dramatically. I was wheeled to the radiology room and given a CT-scan to make sure everything was still in working order (it was), and they went right to work getting me a room on the recovery ward.
We had to wait an hour or two before a room was ready, but by early morning Tuesday, I was back on the recovery ward, re-introducing myself to the staff that had been so relieved to be rid of me. My advice to anyone else getting a posterior fossa decompression: stay away from the Turkey Club.
Coming up Next: The Recovery Ward, Part Deux
It felt good to be back at the hotel. No more pancakes, no more IVs, no more wondering if the person being wheeled down the hall complaining about the pain in his shoulder was going to be my roommate for the next 48 hours... what more could a person wish for?
My wound seemed to be healing nicely. So nicely, that we opted to take a snapshot of it to share with the world:
A stitch in time saves nine...
I was on a regular cycle of meds, and there was no pain to speak of. After a light lunch/dinner made by my wonderful wife, I opted to turn in early and get some rest. I wasn't sleeping well, and eventually woke up in a cold sweat and had the chills.
Stacey took my temperature, several times, and the range was 102 to 103.5. Panic mode was setting in, and Stacey called the doctor's office immediately. I didn't want to go back to the hospital, but I wasn't really in any mood to argue. The doctor instructed me to take some Tylenol to reduce the fever; if that didn't work in the next 60 minutes, I needed to get to the emergency room.
Three cheers for Tylenol! The fever broke in the next 45 minutes, and with that, so did any desire to stay awake. I went back to bed and snoozed through the night.
I woke the next day (Monday) feeling fine. Stacey kept me on a regular routine for medicine, meals, exercise, and naps, and I was looking forward to several days of quiet to aid my recovery. In between the moments of quiet, one can't underestimate the healing effects of surfing the internet. Those healing effects were limited to 15 ergonomic minutes every six hours:
Who needs expensive laptop lifters?
Later that evening, Stacey thought I might want to get out of the room, so we decided to treat ourselves to a light dinner at the always-empty grill downstairs. In hindsight, I should have had what Stacey had. Or more to the point, I shouldn't have had the Turkey Club. Of course, I didn't know that until later.
Later was now here, and I was not feeling as comfortable as I would have liked in the abdominal region. I chalked the pain up to constipation (I know, too much information, but it's relevant), and requested some pharmacy product to alleviate said symptoms.
My wonderful wife, yet again, went on a late run to the store to pick up something to hopefully reduce the bloatedness. By the time she returned, the pain was becoming unbearable, and I perhaps went overboard in trying to remedy this.
I'll keep the graphic detail to a minimum, but lets just say the contents of my stomach decided they weren't altogether pleased with being in me, and having two paths of exit, decided to partake in not one or the other, but both.
After 20 minutes of this, combined with the fever event from the previous night, Stacey decided I needed to go to the emergency room. Once again, I did not want to return to the hospital, but I lost that battle and by 11pm we were pulling into the emergency parking lot.
My emergency room experience started off, and ended, 180 degrees from my experience on the ICU and recovery wards. To begin with, they had apparently little concern for the guy who had just shuffled in, pale, weak, and with a complete lack of focus and energy (if you guessed 'Eric', you win!).
After my urgent request for and speedwalk to the nearest bathroom, they showed that same lack of concern for me, as I sat down and heaved uncontrollably into the nearest garbage can.
When I was finally checked-in, the nurse started me off on an IV. Now there are many places you can put an IV, but the one place not generally recommended is that bendy part between your forearm and bicep. Why? Because if you move your arm from any position past "straight", the needle digs in, and it HURTS. It should come as no surprise then, that the emergency nurse chose precisely that place to put the IV.
While I was being fed IV juice, the nurse told Stacey that my symptoms presented the same as someone who was having withdrawals from pain killers. Yes... I'm also presenting as someone who JUST HAD BRAIN SURGERY and you may shockingly not have noticed, but look at the giant zipper in the back of my head. That's Clue Number One.
Eventually the emergency doctor came in (who was nice), and when she found out I was a patient of Dr. Oro's, things changed dramatically. I was wheeled to the radiology room and given a CT-scan to make sure everything was still in working order (it was), and they went right to work getting me a room on the recovery ward.
We had to wait an hour or two before a room was ready, but by early morning Tuesday, I was back on the recovery ward, re-introducing myself to the staff that had been so relieved to be rid of me. My advice to anyone else getting a posterior fossa decompression: stay away from the Turkey Club.
Coming up Next: The Recovery Ward, Part Deux
Friday, December 5, 2008
Days on the Recovery Ward
The recovery ward finally had room, and my ICU nurse asked whether I wanted to walk the 40-50 yards by myself or take a wheelchair. I was feeling well enough at that point, and opted for the walk (with assistance). I'm happy to report that the walk was uneventful.
The room had two beds, but I was fortunate enough to not have a roommate. The staff couldn't guarantee it would stay that way, but I remained optimistic. Cautiously optimistic, anyway. Throughout my stay, every noise in the hall outside the room would grab my attention, and I'd strain to hear whether I was going to have a new visitor.
Anyway, once we were settled in, someone on the staff (don't recall if it was Dr. Oro, Kimberly, or one of the recovery nurses) took the dressing off of my wound, and the Frankensteinian horror was laid bare for all to see:
Before I could be discharged, the nurses needed to confirm that my... "intestinal plumbing was in order". I'll spare you the details, but they collect everything -- and I mean everything -- to confirm you've done your part. I was having no problem on the front end of things; in fact, I was probably driving the nurses crazy, because whenever I was hooked up to the IV, I'd need to buzz them to unhook me before I could use the bathroom. I'm sure by the time I left, they were happy to be rid of "the guy in Room 305".
As for the business end, not so much luck there. By the end of the second day, with a large degree of effort on my part (and a clearly poor effort on the part of my large intestine), I managed to produce enough to qualify me as "dischargeable". After a final check-up from my doctor and his team, I was given the okay to go home.
Fortunately for me, home was temporarily a hotel only a few miles away, and although the hospital stay wasn't bad by any stretch of the imagination, I was looking forward to being free of dangling IVs, some regular food, and my own schedule.
Stacey gathered up all of my things in the room, and hurried off to bring the rental car (a Jeep Liberty -- a wise choice for Colorado in November) to the pick-up area. I was finally given reprieve from world of IVs, and was wheeled down -- first class -- to the car. They helped me in, and we drove off to the hotel for four days of non-hospital rest and recuperation.
Finally, the hard part was over. Or was it?
Coming up Next: You Have GOT to be Kidding Me
The room had two beds, but I was fortunate enough to not have a roommate. The staff couldn't guarantee it would stay that way, but I remained optimistic. Cautiously optimistic, anyway. Throughout my stay, every noise in the hall outside the room would grab my attention, and I'd strain to hear whether I was going to have a new visitor.
Anyway, once we were settled in, someone on the staff (don't recall if it was Dr. Oro, Kimberly, or one of the recovery nurses) took the dressing off of my wound, and the Frankensteinian horror was laid bare for all to see:
Just add bolts...
Although it isn't obvious from the picture, the back of my head felt very "puffy". When I pressed down on the skin around the suture, I would hear a squishy sound. For this reason, I didn't partake in this activity frequently.
I was on the recovery ward for the next two days, and the schedule was very routine. I would receive a call in the morning to order breakfast, a call in the afternoon for lunch, a call in the evening for dinner. The food was surprisingly decent, although you can only eat so many pancakes before you're ready for something else.
The nurses would change shifts between 7am - 8am and 7pm - 8pm. The shift change meant a new nurse and nurse's assistant would come in the room to introduce themselves, and the new team would familiarize themselves with my dosage schedule (and I'm sure any particular idiosyncrasies). The staff was very nice and accommodating, and even though each nurse had a 5:1 nurse-to-patient ratio, I was never made to feel like a burden.
Being able to rest in the bed for hours was great, and Stacey would stay in the room during visiting hours (8am - 7pm) -- probably bored beyond belief, but she never said anything. She would keep herself busy reading, watching tv, and ordering my meals for me.
My only complaints I had while on the recovery ward -- and yes, I do understand I wasn't on a retreat -- were the early, early wake-up calls to take my medicine, and the IVs. The 1am, 3am, 5am, etc. wake-up calls really weren't all that bad, because the stuff was strong enough to knock me right back out inside of 20 minutes.
The IVs, on the other hand, I was not a big fan of. I hate needles to begin with, and I had more IVs stuck in me during my entire hospital stay than I've had in my entire lifetime. More on that later, but lets just say if I never have another IV put in one of my arms, I'm still ahead of 90% of this country on IV points.
During these two days, I'd get up every few of my waking hours and take a lap or two around the square-shaped ward to keep the blood flow moving and stretch out the neck muscles. I was shuffling at first, but by the second day was moving around at a pretty good pace, and with the help and suggestion by one of the physical therapists on staff, even went up and down a couple flights of stairs.
I also had the privilege of taking my first shower-with-wound. I tried to put it off as long as I could, but eventually had to go through with it. You get the water running at a comfortable temperature, and very cautiously sit yourself down on the stool already present in the shower stall. They give you baby shampoo for your entire head, but I wouldn't go near the wound, so the back of my head -- what little hair there was anyway -- was probably pretty greasy by the time I left.Although it isn't obvious from the picture, the back of my head felt very "puffy". When I pressed down on the skin around the suture, I would hear a squishy sound. For this reason, I didn't partake in this activity frequently.
I was on the recovery ward for the next two days, and the schedule was very routine. I would receive a call in the morning to order breakfast, a call in the afternoon for lunch, a call in the evening for dinner. The food was surprisingly decent, although you can only eat so many pancakes before you're ready for something else.
The nurses would change shifts between 7am - 8am and 7pm - 8pm. The shift change meant a new nurse and nurse's assistant would come in the room to introduce themselves, and the new team would familiarize themselves with my dosage schedule (and I'm sure any particular idiosyncrasies). The staff was very nice and accommodating, and even though each nurse had a 5:1 nurse-to-patient ratio, I was never made to feel like a burden.
Being able to rest in the bed for hours was great, and Stacey would stay in the room during visiting hours (8am - 7pm) -- probably bored beyond belief, but she never said anything. She would keep herself busy reading, watching tv, and ordering my meals for me.
My only complaints I had while on the recovery ward -- and yes, I do understand I wasn't on a retreat -- were the early, early wake-up calls to take my medicine, and the IVs. The 1am, 3am, 5am, etc. wake-up calls really weren't all that bad, because the stuff was strong enough to knock me right back out inside of 20 minutes.
The IVs, on the other hand, I was not a big fan of. I hate needles to begin with, and I had more IVs stuck in me during my entire hospital stay than I've had in my entire lifetime. More on that later, but lets just say if I never have another IV put in one of my arms, I'm still ahead of 90% of this country on IV points.
During these two days, I'd get up every few of my waking hours and take a lap or two around the square-shaped ward to keep the blood flow moving and stretch out the neck muscles. I was shuffling at first, but by the second day was moving around at a pretty good pace, and with the help and suggestion by one of the physical therapists on staff, even went up and down a couple flights of stairs.
Before I could be discharged, the nurses needed to confirm that my... "intestinal plumbing was in order". I'll spare you the details, but they collect everything -- and I mean everything -- to confirm you've done your part. I was having no problem on the front end of things; in fact, I was probably driving the nurses crazy, because whenever I was hooked up to the IV, I'd need to buzz them to unhook me before I could use the bathroom. I'm sure by the time I left, they were happy to be rid of "the guy in Room 305".
As for the business end, not so much luck there. By the end of the second day, with a large degree of effort on my part (and a clearly poor effort on the part of my large intestine), I managed to produce enough to qualify me as "dischargeable". After a final check-up from my doctor and his team, I was given the okay to go home.
Fortunately for me, home was temporarily a hotel only a few miles away, and although the hospital stay wasn't bad by any stretch of the imagination, I was looking forward to being free of dangling IVs, some regular food, and my own schedule.
Stacey gathered up all of my things in the room, and hurried off to bring the rental car (a Jeep Liberty -- a wise choice for Colorado in November) to the pick-up area. I was finally given reprieve from world of IVs, and was wheeled down -- first class -- to the car. They helped me in, and we drove off to the hotel for four days of non-hospital rest and recuperation.
Finally, the hard part was over. Or was it?
Coming up Next: You Have GOT to be Kidding Me
Monday, December 1, 2008
Day 2 - The ICU
After a solid day and night of sleep the mental fog had dissipated. There was just one thing nagging at me. I was certain it was the result of a morphine-induced dream -- it had to be. Nevertheless I needed confirmation, and ever so apprehensively stole a glance at my feet. It wasn't a dream! I was still wearing those YELLOW NON-SLIP BOOTIES!!!
Fortunately the medication was wearing off, and the pain had moved to the forefront enough to distract me from the toe-warming abomination.
Speaking of pain, one nice thing about recovering in the ICU was the pain button. Whenever I would feel pain coming on, I would only need to click the "pain button" to get a quick dose of whatever it is that silences nerve endings. This was only used for the first night of recovery, and it was a welcome friend at that time.
I would never actually plan a vacation to the ICU ward at the Medical Center of Aurora, however in hindsight the ICU was a nice place to be post-surgery. The nurse-to-patient ratio was roughly 2:1, so there was no lack of attention.
The nurse who had apparently drawn the short stick and was assigned to my room was a happy guy named Mike with a solid sense of humor. He was extremely attentive and was on top of everything -- making sure meals were ordered, medication was working, effort was being made to use the bathroom, and walks were being attempted.
Another thing Mike emphasized was the use of the incentive spirometer. The objective of this device is to force patients to inflate their lungs and prevent pneumonia from developing. I referred to this as an aspirator until today, when with the magic of Google I was able to figure out what it's really called.
I felt like I was making great progress in the ICU. I was able to get up to use the bathroom, keep my food down, transition to regular pain meds, and laugh at bad jokes. I was surprised at how well things were going. I had braced myself for multiple days of nausea and relentless pain, and although it wasn't a day at the spa, things could be worse.
Even more surprising -- to me anyway -- was that my mysterious psycho-somatic cough had completely disappeared. That cough that had persisted for weeks and driven my poor wife and friends to the brink had up and gone away. All I needed the whole time was brain surgery! Go figure.
Throughout that first day post-surgery, I was seen by a number of different hospital-specific occupations -- Physician's Assistant, Physical Therapists, ICU Nurse, Student Doctor, Real Doctor, etc., all making sure I had successfully completed their part of the process. Although the visits were frequent, the level of attention was comforting.
By late afternoon the staff was convinced that I was headed in the right direction, and once a bed was ready I was moved to the regular recovery area.
Coming up Next: Days on the Recovery Ward
Fortunately the medication was wearing off, and the pain had moved to the forefront enough to distract me from the toe-warming abomination.
Speaking of pain, one nice thing about recovering in the ICU was the pain button. Whenever I would feel pain coming on, I would only need to click the "pain button" to get a quick dose of whatever it is that silences nerve endings. This was only used for the first night of recovery, and it was a welcome friend at that time.
I would never actually plan a vacation to the ICU ward at the Medical Center of Aurora, however in hindsight the ICU was a nice place to be post-surgery. The nurse-to-patient ratio was roughly 2:1, so there was no lack of attention.
The nurse who had apparently drawn the short stick and was assigned to my room was a happy guy named Mike with a solid sense of humor. He was extremely attentive and was on top of everything -- making sure meals were ordered, medication was working, effort was being made to use the bathroom, and walks were being attempted.
Another thing Mike emphasized was the use of the incentive spirometer. The objective of this device is to force patients to inflate their lungs and prevent pneumonia from developing. I referred to this as an aspirator until today, when with the magic of Google I was able to figure out what it's really called.
I felt like I was making great progress in the ICU. I was able to get up to use the bathroom, keep my food down, transition to regular pain meds, and laugh at bad jokes. I was surprised at how well things were going. I had braced myself for multiple days of nausea and relentless pain, and although it wasn't a day at the spa, things could be worse.
Even more surprising -- to me anyway -- was that my mysterious psycho-somatic cough had completely disappeared. That cough that had persisted for weeks and driven my poor wife and friends to the brink had up and gone away. All I needed the whole time was brain surgery! Go figure.
Throughout that first day post-surgery, I was seen by a number of different hospital-specific occupations -- Physician's Assistant, Physical Therapists, ICU Nurse, Student Doctor, Real Doctor, etc., all making sure I had successfully completed their part of the process. Although the visits were frequent, the level of attention was comforting.
By late afternoon the staff was convinced that I was headed in the right direction, and once a bed was ready I was moved to the regular recovery area.
Coming up Next: Days on the Recovery Ward
Sunday, November 30, 2008
Day 1 - Surgery
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
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
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
Subscribe to:
Posts (Atom)
Posts
