I had my six-month followup with the neurologist this afternoon. He put me through the old familiar round of physical tests — reflexes, strength, sensitivity, and so on.
Here's something you might not have known: when the doctor does a test on you and then calls his colleagues in to see him do the test again, you can count on it being either very good, very bad, or very weird.
Mine was very good... and just a bit weird.
When the doc does the old "tap with a hammer" reflex tests, each leg reacts strongly — stronger than expected, given how badly I had declined prior to the surgery, and given the level of recovery everyone has anticipated. That's good. Those nerves, at least, are working.
What's weird is, when each knee is rapped, that leg kicks out really well, but the other leg reacts too. Not as strongly, and not in the same way; the other leg pulls in towards the middle. That's what drew the audience.
The neurologist explained it to me, and while I understood all the words, the sentence made no sense to me at all. As near as I can figure, I have the equivalent of some crossed wires somewhere in my central nervous system.
On the whole, though, the doc considers me his "miracle man" — his words, not mine. I'm doing so much better than I or anyone ever dared to hope. I'll never be completely normal, but I'm closer than I ever thought.
After a couple of years of all this pure, refined weapons-grade crap happening to me, I've come out of it with permanent nerve damage, a couple of bitchin' scars and no life's savings. I didn't even get a t-shirt.
Today, though... sing with me: "I've got a golden ticket."
Just in case you didn't get a good look at that...
Great parking for the next five years. I may not always need it, but I figure it's better to have it and not need it than need it and not have it. So, at least I've got that going for me.
Oh, maybe this would be better:
Great day at PT today. I didn't keep track of how far or how fast I walked. I was faster and more stable, but I didn't go as far as usual, due in large part to a new exercise I got to try today, the dreaded getting up off the floor without assistance exercise.
The lesson learned: get assistance, or plan on staying on the floor.
Note to self: don't count on being able to do anything after a physical therapy session.
It's amazing what a decent night's sleep does for both mind and body... even if your "night" goes until noon, or sometimes even later.
Yesterday was a challenge from start to finish; it may have been the busiest day I've had in two years — the first half physically, the second half mentally.
From the moment I rolled out of the rack, it was go-go-go. Shower, dress, feed the cats. Because of an upcoming change in my employment situation (more about that later) I had to dash out to get some paperwork notarized. Then a run to the pet store for a load of kitty litter. That stuff is heavy; good thing I have a full-size pickup truck.
I'd seen my regular doctor on Thursday, and he finally decided that my peripheral neuropathy was worthy of being treated, so he wrote a scrip for Neurontin. So, a stop at the pharmacy, to drop off the new prescription.
But I wasn't done running around yet. Next was physical therapy. I was still sore from Wednesday's labors, but along with the usual strength-building exercises, I managed a sans-cane walk of 900 feet, at a speed of .91 miles/hour.
Someone please inform the media.
My walking is getting better, but it isn't really getting to be good. Small objects are big obstacles, and while what I do could be, in the broadest sense, considered "walking," it often bears more than a passing resemblance to waddling. As significant to me as the distance and speed is my increasing ability to avoid disaster with what might be termed "fancy footwork" — I'm getting better at recovering from nearly falling over, though as I get a bit bolder with my walking, the tendency to tip over is a bit more frequent.
I must remember the rule.
Thoroughly exhausted after an hour of abuse at the hands of the therapist, I headed... not home, but to run more errands. First to the vet; more about that later. Then it was back to the pharmacy to pick up my new prescription. Only then did I get to go home.
I got home, crawled up the stairs, took my new meds, and logged on just in time to begin my shift at work... and that's when my day really began.
When you do tech support for an installed base of 30,000+ routers, there are going to be bad days, and mine began immediately — a routing problem landed on my desk precisely 21 seconds after the start of my shift. I don't really mind routing problems, but some are annoying rather than interesting to investigate. And I can count myself fortunate that there are not usually problems stacked up waiting for my arrival.
I've never said and I probably never will say for whom I work, other than the obvious "big telecommunications & networking company," but I will say this: my teammates really are among the best engineers in the networking business. We generally try to take care of each other and not drop junk on the next shift to come online.
The first annoyance of the day was quickly dealt with, and I was readying myself for the next broken router to drop on my desk when I was pinged by my manager. It seems one of our largest customers — I won't (and will never) say who, but I guarantee you know who they are — is doing a migration from one service we offer to a new service, and they're doing it at hundreds of their retail locations. New routers, new T1 and ATM lines, new voice-over-IP setups... egads. So, I got to spend my evening watching for dead routers and making sure that any incidents were properly followed-up upon. There were dozens. I lost count.
Oh, and another customer had a funky T1 problem that had gone on for so long that they were seeing red and needed their hand held all night long by senior engineering staff (i.e., my teammates and I) particularly as our senior management was watching the progress of the issue.
I should also note that my new meds can cause drowsiness. Staying alert would have been a challenge, but between my regular workload, the "high touch customer" hand-holding, and the migrations, I was researching, thinking hard, typing and/or talking every minute of the night, often on more than one issue simultaneously. I barely had time for bathroom and cat-feeding breaks.
By the end of my shift at midnight, I was toast. Burnt toast. I fed the cats and went to bed.
It was, all in all, a very productive day, and I slept like a log. Kismet woke me up this morning with his usual "I'm grooming daddy's head!" behaviour. There are worse ways to wake up.
For me, there's a downside to "giving 100%" at physical therapy: it leaves 0% for me for the rest of the day.
Ever gone to the gym and lifted weights until you thought you couldn't move your arms? That's me and my legs after PT. I'm sore as heck, and almost immobile.
Well, I didn't set any distance records at physical therapy today. Walking without the cane today, I was on pace to break both my speed and distance record, when the therapist decided to increase the degree of difficulty by adding an obstacle to my path.
Said obstacle was four-foot length of 3/4" wooden dowel, laid across my path.
Laugh all you want, but lengthening or shortening my stride so as not to step on any small thing, and stepping over the obstacle are both significant physical challenges. Especially for a klutz like me — even before this whole neurological nuisance began, I'd have easily tripped over a 3/4" obstacle.
With the obstacle in place, I was only able to make it 600' before I had to take a couple minutes for a breather. On the plus side, I increased my speed over last week, from .68 to .76 MPH.
And then after a couple minutes, I did it all again — another 600', again at .76 MPH.
I'm beginning to believe that there's something to this whole physical therapy business.
Most people dislike Mondays because that's when they return to their humdrum jobs.
I dislike them because Mondays are the days I do all my chores — take out the trash, vacuum the house, do laundry, and so on. I try to get groceries on Mondays, as well, but it doesn't always work out that way. So, for the rest of the day, I'll be puttering around the house.
On the whole, though, I'm glad to be able to do as much as I can. Not too long ago, of course, I was incapable of all but the easiest household task. They aren't easy for me now, but they're getting to be less difficult. I can't believe how much better I am than I ever expected, and I'm grateful for it.
Tuesday, though, I am going to try to have a little fun — I'm going to do my utmost to make a trip to the rifle range. It's been about two years since I've been able to go, and I have some much-neglected hardware that needs to be given a workout. I'm confident I can schlep my wheeled hard-shell rifle case from the parking lot into the range, and once there I ought to be able to handle the usual walking up- and down-range target placement and marking activities.
My only concerns are the temperature — the range, indoors, has fans but no A/C — and the smoothness/slickness of the concrete floor. Too smooth and/or slick, and my cane will be slipping around. That would be a Bad Thing, indeed.
I may have to postpone, though; Mycah's not being her usual self. She seemed to be a bit off her feed at breakfast time today, she hadn't used the litterbox since last night, she's not been so stand-offish with Kismet and Packet, and she's moving a bit slower than normal. I had to call her repeatedly to come down for breakfast; usually, she's there ahead of me meowing with anticipation. I need to keep an eye on her today and make sure she's just having a bad day, as opposed to actually being unwell.
She had her 13th birthday just a month ago, but that doesn't necessarily make her an elderly cat quite yet. I'm more concerned about the diabetes and, to a lesser degree, her hyperthyroidism. Kidneys are a cat's weak spot, I think, so I really need to keep an eye on her potty behaviour. I hope the old girl has a few more years left in her. Kismet and Packet need to be swatted from time to time, and she's just the girl to do it.
Coincidentally, she has a vet appointment for tomorrow for her 6-month checkup. We'll see what the vet says.
Mycah's Potty Update: She used the litterbox while I was off doing my chores. She didn't just whiz, she whi-i-i-izzed. No poo yet, though. And she refused to come downstairs for her evening feeding. Not good.
I had an excellent day at physical therapy. I walked caneless again, this time making it 720 feet before reaching my limit. The improvement is truly staggering... which, coincidentally, is pretty much how I still walk.
It took me 12 minutes to cover those 720 feet. A little quick math... OK, carry the one... that's a speed of roughly .68 miles/hour.
Not exactly blazing, that. But it is definite improvement.
I seem to be doing better and better at the walking-without-a-cane business. Today at physical therapy I made it 360 feet non-stop. Sure, it was on a smooth and level surface with no obstacles, but I'll take what I can get.
There were a couple of moments when I almost lost my balance, but I was able to recover with a wee bit of fancy footwork — one of the first skills to escape me when my condition was becoming apparent almost two years ago. This is unexpected, but extremely encouraging.
Walking without a cane is very strenuous, much more so than walking with the cane. Moving forward isn't the problem; avoiding falling over to the left or the right is. With the cane, I can actually move pretty quickly for short periods. Without the cane, though, I have to rely solely on muscles that just don't work very well for the lateral support usually provided by the cane; I have to walk like a not particularly spry 90 year old — very slowly and cautiously, every step taken with deliberate forethought. No jokes, please, about walking and chewing gum.
I'm physically exhausted when I'm done walking, but it seems to be paying off.
Like pretty much everyone, I used to talk the simple act of walking for granted. Now that I'm out of a wheelchair and off crutches, even though it can be very difficult, I'm thankful for what little I can do, and hopeful that I might be able to do more in the future.
At PT today I walked 210 feet before I had to touch my cane to the floor to keep from falling over.
And then I did another 150 feet.
It pretty nearly wiped me out. By the time I finished the walking, I was utterly soaked in sweat.
The hardest part of walking sans cane is keeping my feet fairly close together, rather than shoulder-width apart. A narrow stance is inherently less stable, but I don't want to be accused of having a wide stance, ifyouknowwhatImean.
I won't be setting any land speed records any time soon. On the straightaway I'm slow, and when I have to turn around, I'm even slower.
Nevertheless, this is much better than I ever expected.
I had an excellent day at physical therapy today. I walked 120 feet without using my cane, and without falling down.
It'll be really impressive, though, if and/or when I can do it over uneven ground. Pebbles remain a significant obstacle.
I've not written much about health matters lately, mainly because while there is improvement, it's no longer as rapid or as startling as it was early on. I've surpassed all expectations, so any further improvement is pure gravy.
Physical therapy continues twice weekly... or maybe I should say weakly. The focus remains on building strength in my legs, accomplished by adding more weighs or more reps to the exercises I do, and the addition of new exercises to work new muscles.
On top of that, I spend time walking. I can do 15 to 20 minutes now, using the cane. Monday, I did 4/10 of a mile, at an average speed of 1.5 miles/hour. That's the fastest and farthest I've managed since this whole thing began. I started out slow as usual, but halfway through the walk I made an effort to stretch out my stride, and I think for a while I was walking almost as fast as a normal human, maybe 3mph for a while there.
Best of all, at one point I picked the cane up off the floor and was able to walk maybe 30 feet without it. I was slow and shaky that way, but I did it.
By the end of the walk, though, I was completely blown. I was relying on the cane for support, whereas I usually use it mainly for balance.
I've discovered that my cane really sucks for support. It's strong enough, no doubt, but the handle is the shepherd's crook style, as opposed to the more wrist-friendly "fritz" T-top style. After ten minutes afoot, my wrist really starts to get sore.
I have no idea who Fritz is or was.
I only paid $10 for this current cane, so I really ought not to have expected perfection. And, hey, it's the first time I ever had to buy a cane. It's not something one spends one's life anticipating and researching.
It's done yeoman's service with nary a complaint, but since I anticipate needing a cane, well, forever, I think it's time for a new one — one that will be better on my wrist, will be tall enough for me, and will be sturdy enough for me.
Fortunately, there is a place I know where I can find what I need: Canes Galore. No fooling.
I like the Hercules. It's more than long enough, it can support me with one or two of my siblings' teenage kids on my back, and it looks like it could last a lifetime.
Shortly before going to bed last night (this morning, really) I came down with a fever and aches. Swell. At least it didn't wait until my weekend starts at midnight tonight. I can work through being unwell, but I hate losing my days off to illness. I have too much to do.
I think I need to have my shunt adjusted. When I occasionally cough or sneeze, I feel what might be described as a pressure spike in my head — a momentary pang, like a headache that comes and goes in a split second. I think there's still a bit too much pressure in there.
I keep making progress at physical therapy, and my reward is more weight on my ankles, or newer more difficult exercises.
The birds in my neighborhood are retarded. They start chirping about two hours before sunrise — right outside my bedroom window. The feathered buggers can make it hard to get to sleep.
A thunderstorm in the wee hours of the morning, however shuts them right up... and I have no trouble falling asleep if it's thundering or pouring rain.
The cats get a bit nervous, though. Kismet curls up tightly right against me, and Packet stretches out on the bed as well. Mycah would come up, but she rarely ever voluntarily approaches the lads.
They, on the other hand, continually try to make friendly with her. It's particularly noticeable at feeding time. I call "food!" and the cats know it's time to go downstairs. Packet races down to the bottom of the stairs and flops down. Kismet positions himself on the landing halfway down. Mycah follows behind me as I go down — she gives Packet a brief hiss and heads down past him... and he follows, batting at her tail. She then gets to the bottom of the stairs ahead of me, and has a few words with Packet, who lays there oblivious to her demand that he move out of her way. It's as if he is daring her to approach him... but he eventually gets out of the way.
Food seems to be the great unifier, though. When the hairball treats are being distributed, Mycah has no objection whatever to the lads' immediate presence. Once the treats are gone, though, the hissing starts again... but she's getting better. Eventually she'll tolerate the lads.
Work starts in a couple of minutes. Sundays are usually pretty quiet, but this week so far has been fairly heinous. I can work through the fever and headache... but I'd rather have a nice night where no part of the network breaks. Ya, right. We have 30,000+ routers under management — something will go wrong at some point.
OK, I just logged on and I see that it has been slow so far today. I guess we got most of it out of our system over the past week.
Have a good Sunday, folks.
Update: the Fates laugh at me. I just spent three hours trying to figure out a routing problem on the core backbone, and what to do about it.
Yes, I fixed it. Bloody nuisance.
I don't know what I was thinking.
Today being the day of the week I set aside for chores and errands, I got started at the crack of noon. Up, shower, dress, feed the cats, and depart to run errands.
I didn't have that many things to do — pick up cat food and litter at the Petsmart, get Mycah's meds and prescription food at the vet's office, and pick up some carpet cleaning supplies.
I think I bit off more than I could chew. Kitty litter and food are, of course, all the way at the back of the Petsmart.
Carpet cleaning supplies are all the way at the back of the Home Depot.
And since I was passing by, I stopped at the Target to pick up a cheap-o DIY bookcase, since I have way more books than shelf space.
Furniture is alllll the way at the back of the Target.
Then home... to unload all the crap from the pickup. And then take the trash out and wheel the bin down my treacherously steep driveway to the curb. Dragged myself up same driveway.
Then fed the cats again. Then hauled myself and my acquisitions up the stairs.
Going up stairs ought to be easier for me now than in February, but it isn't; I'm still having strength issues.
I've spent more time on my feet today than I have in a couple of years. I'm absolutely whupped, and I pretty much need to hit the shower again.
And I still haven't done any actual housecleaning. Sigh. I guess that's my day tomorrow.
At least I haven't fallen down.
I heard on the news today that Senator Kennedy had gone under the knife for the recently diagnosed tumor. Best of luck to him with that. I don't like his politics at all, but in this I can do naught but wish him well.
Of course, he's not going to need too much luck. He had the best neurosurgeon in the world.
I should know. He was my neurosurgeon, too.
The upside to my recovery: I can feel my feet again.
The downside: I can feel the gout again.
It's been a busy week here, and I find that the pace of my recovery, while slow, continues steadily. I'm walking a lot better with the cane, and haven't as much as touched my crutches in about two weeks. I'm not throwing them away quite yet... but I'm almost there. I can even walk very short distances without the cane.
Well, not so much walk as stagger. It's not the finest perambulation I've ever done, but it's better than I've managed in over a year.
Physical therapy continues twice weekly. Every time I get to be good at something, they go and add weights to my legs. I'm up to a whopping eight pounds around each ankle for the leg extension exercises.
Eight whole pounds. Inform the media.
I find that I'm using muscles that haven't been used in quite a while. They hurt, actually... but hey, at least I can feel them.
Part of what I've been doing this week has been preparation for the likely arrival of one or two — probably two — new young cats in the house. I've stocked up on all the essentials, food excepted. Since the shelter provides a bag of food with the cats, I can wait to see what it is they are used to.
On Saturday, before work, I'll be heading to the Cat Angels adoption facility to see if any of their available furballs will have anything to do with me. They have several pairs of young cats, about a year old. All the information I've seen points to the fact that when bringing new felines into a home with an older cat, it's best to get two, so they'll play with each other rather than pester the older cat incessantly. That works for me. I can give a good home to a couple of rescued cats.
How Mycah takes the news remains to be seen. I've been giving her lots of attention; I'm hoping she won't be too resentful of the time I commit to the newcomers over the course of the next couple of weeks as they get used to their new home and new Food Giver And Litter Scooper. I think she'll be very curious, perhaps a bit hostile, then annoyed, and finally indifferent.
And who knows? She might actually like the newbies. Young cats should not be threatening to her in any way. We'll see.
While I was in the midst of my medical problems, I received a lot of support from quite a few people. Mom, of course, came and stayed here in NC — bored out of her skull most of the time, I don't doubt, between rounds of driving me to the doctors and doing those things around the house which I was incapable of doing for myself. My sister, too, made a few stops here to help. The two of them were invaluable; without their help, I'd have had to sell my house and move to some sort of single-story assisted-living facility.
No kidding. I was unable to fend for myself.
Many others provided moral support. I can't count how many emails I received, all full of encouragement. And there was at least one church congregation praying for me regularly.
The medical care I received was top-notch. My regular doc was and is as good a GP as I've ever dealt with. The neurologist I went to is one of the best in the country, and the neurosurgeon who drilled me is arguably the best neurosurgeon in the world. Plus, there were really cute nurses all along the way. Hey, I'm a man... you didn't expect me not to notice, did you?
Further, when I had a fundraiser going here to help offset my massive medical bills (which so far have added up to over a year's pay... egads) more than just a few people made donations to help out. It made a difference.
Now I'm in a situation where my past medical bills are all paid up, where the minor ongoing treatment (physical therapy, mostly) is relatively simple for me to handle... and I have my tax refunds in the bank.
I've always tried to be a charitable guy; I could do a lot better. I want to do better. So, I've recently seen a couple of situations where maybe I could directly make a difference, where I could give someone with insanely high vet bills some of the same sort of support that I was blessed to receive when I was down.
Moki is a tough little fighter with an undiagnosed neurological condition. If you think this reminds me of my own situation, you'd be exactly right.
LillyLu is another cat with enormous vet bills... particularly since her human is getting ready to have twins of her own.
Both those linked sites have orange "Donate" buttons in the sidebars. Go on, hit them. Every little bit helps. Big bits help, too.
For those of you who are charitably inclined, but feel the need to have tax deductability, there is the newly-founded Cat Friends Helping Friends. There are plenty of people-oriented charities, but as far as I know, there's just this one that helps people with big veterinarian bills. Go help them out.
Now that I can walk — not well, mind you, but a cane is usually sufficient to my needs — I haven't had a fall in almost a month, now — I'm really hankering to do something I haven't been able to do in well over a year: go to the rifle range and make holes in paper.
There's just one small problem: while I can walk, I cannot carry things particularly well. My balance* is not yet reliable enough, and those of you who've ever been shooting know that a trip to the range always involves a fair amount of toting.
I suppose getting groceries into the house might be considered good practice. Once a week, I order groceries online and pick them up a few hours later. The goods are deposited into my vehicle curbside at the store, but when I get home I have to schlep the week's acquisitions from truck to house. Fortunately, it's a short trip, and there are what amount to handholds almost every step along the way. And of course I don't try to carry the entire load in one trip.
Going to the range would be a different matter altogether, as far as portage is concerned. It's a longer haul, with a bigger load... and if I were to fall, there'd be no easy way to get up again, short of crawling back to my truck and pulling myself up. I can't yet get up off the ground without something to use as leverage.
Since I don't have any servants on staff, what I really need if I want to go to the range is to coordinate with someone for a meetup at the range.
You know, a play-date.
* It's not actually my sense of balance that is weak, it's the ability of my legs to keep me up straight, to react in a timely manner to keep me upright if I should happen to lose my balance.
I'm really really glad I didn't have my surgery in Germany.
I'm making good progress, recovery-wise. I still need crutches to handle a trip down my very steep driveway, but otherwise I'm makiing good use of my cane.
It's been three weeks since I've had a fall. I attribute this to my finally taking the advice offered to Luke by Han: don't get cocky. Since the surgery, every time I've fallen, it's been because I was trying to do too much, too fast.
Sure, it's incredibly geeky of me to mention the reference. But whenever I'm afoot and tempted to go faster than usual or to cross an obstacle, I hear that voice in my head: don't get cocky.
It's good advice. Falling hurts. More precisely, landing hurts... but the results are much the same.
Yesterday I was the subject of the latest iteration of the Taser test, wherein my legs were covered with electrodes, and varying levels of electrical current then applied, in order to determine the responsiveness and conductivity of the nerves in my legs.
Shocking, I can tell you.
On the plus side, I could actually feel the tingling induced by the lower level current, and the jolts induced by the higher levels.
On the minus side, the jolts hurt.
The result of the test seems to be that my remaining neuropathy is basically the same as it was the last time I had this tested, back in August. This isn't necessarily a good or a bad result; my overall condition declined severely after the last test, and has improved quite a bit since the surgery in December.
I've suspected for a while that there have been multiple problems occurring simultaneously, complicating the initial diagnosis of hydrocephalus. Well, that's been pretty well resolved through the surgery; what remains is anybody's guess.
There's a chance the neuropathy will resolve itself as my recovery continues, so we'll be watching and waiting for a few months. In the meantime, my progress has been pretty good. Regular physical therapy and exercise seems to be helping quite a bit. I still use the crutches for the most difficult walking conditions, but I'm hoping to dispense with them soon; the cane suffices for almost everything.
Speaking of PT, it's time for me to go....
It's been almost three months since my surgery. Since then, the news has been almost all good.
My recovery is proceeding, albeit slowly. I am walking almost exclusively with only (only, he said) a cane. It it only rarely I feel the need to resort to crutches — only on occasions when I think the walking is particularly treacherous... like walking down my very steep driveway to get the mail.
From a seated position, I can lift my feet straight up off the floor. I can and do negotiate the stairs in my house several times a day. I can walk without even a cane for short distances... though I don't like to take the risk. "Don't get cocky" isn't just a line from a movie, it's good advice for those, such as I, who wish to avoid face-planting on the carpet more than once a week.
I go to the physical therapist's office for the twice-weekly torture sessions, as there are some exercises and stretches I am as yet unable to do unassisted. My progress there is slow, but they keep adding weights to my ankles as I do the various routines. I'm up to a whopping four pounds per leg on the leg extension exercise, for instance.
I had a visit with the neurologist this week as well. After testing my reflexes and muscle strength, he pronounced himself very pleased with my progress... but he also scheduled me for a nerve conduction test.
Yes, another test. Since the surgery, I have regained the use of the muscles in my legs, but some are considerably weaker than they should be, and there is a remaining degree of peripheral neuropathy. In addition, some "wires" still seem to be crossed. For example, when whacking one knee with the little rubber hammer to test the reflexes, both legs react.
So, another test. This is the one I refer to as the Taser test. By sending an electric current into specific nerves and observing the muscle reactions, they can gauge the functionality of the nerves in question.
Of course, it involves being tazed repeatedly. It's not terribly fun, let me tell you. Really, though, I can take it. If it were being done to no purpose, I would object, but since there's a good reason for it, and might ultimately lead to a better fix for me, I can tolerate it.
So, to summarize: I'm doing a heck of a lot better than I was three months ago, and continuing to improve. I may not ever make it to 100%, but I am nevertheless very happy with how things are proceeding.
In what may be a sign of things to come, I made a trip to the office yesterday to get my new laptop configured with all the standard corporate software. The folks there at the office were rather surprised to see me — the last time I was there was a brief stop in June.
In what may be a further sign, the configuration appointment was cancelled by our helpdesk people, and I came home unconfigured to work my shift at my usual desk here.
So I have this nice shiny new laptop that is as yet unuseable for work purposes... and I'm not particularly interested in using it for anything else, either. It occurred to me today that I spend virtually every waking minute in front of a computer... and to be honest, it's getting pretty old.
It'll happen in due course, but I'd kill to be able to go out to the garage and do a little woodworking.
The config appointment is now rescheduled for tomorrow. Driving isn't hard at all, but it's still rather a difficult chore to get cleaned up, dressed up and packed up to go to the office, and will continue to be for a while, but the key thing is that it's getting easier.
Pain heals. Chicks dig scars. Glory... lasts forever.
Parts one and three of that quote (source) are pretty much true.
How about part two?
Chicks: I'm totally available. Ignore the
thinning thin hair. Unless you think it's the sign of an exceptionally active brain, in which case, by all means, pay attention.
Just don't expect me to take you dancing quite yet.
Physical therapy proceeds apace.
Yesterday's session was productive, though painful. My legs felt (yes, I can feel them!! Woohoo!!) like limp noodles when I'm all done. "No pain, no gain" might be a cliché, but it is so only because it is so often true.
The highlight of the day was when I took ten steps — albeit shakily — without the support of either crutches or a cane.
Plus, I drove myself there and back; I have enough control and strength in my right leg to do that. Which means I can now drive my Mom to the airport and
send her let her go home.
I may still be using a cane for a long time, but only for balance, not to hold myself up. Not a bad result for spending the better part of a year's income on medical care.
When I had my taxes done (yes, I have already filed — jealous much?) it turned out that I'm getting almost all my withholding back. And because I delayed payment for the surgery until after the start of this year, I'll get to take that as a deduction a year hence. The refunds won't (not by a very long shot, believe me) make up for the huge cash outlay, but they take away a bit of the sting.
I went to my first session of PT earlier today.
The BIG news is that I drove myself there — the first time I've driven since June. It felt good, really good.
The PT session was mainly an assessment of my current state. My leg muscles were described as "tight as a bowstring and weak as a kitten." Not an ideal combination, I can assure you. Particularly once the therapist went to work on me. Egads, that was difficult. If they did to prisoners at Gitmo what they did to me today, Amnesty International would probably have a conniption. Not that they don't already; like most of the Left, having conniptions is what they do.
Still, it's all to the good. Plus, compared to the rest of the bills I've paid, the bill for today's session was like a fart in a hurricane.
Yesterday I had my post-surgical followup appointment with the neurosurgeon at Duke. The point, as far as I was concerned, was to make sure that I'm ready for serious physical therapy, something I haven't actually been doing yet.
So, off to Duke. When we got there, we valet-parked the truck, and then proceeded from the front entrance of the facility to the Neurology Clinic — a distance we estimated at about two or three blocks. It's a big facility. For the first time, I covered this ground without using a wheelchair. That was easily the farthest I've gone and the longest I've been on my feet in a year.
I get around the house these days with a cane, but when out of the house I still use my crutches; it's a matter of safety, really. I'm still too shaky to get very far without three points of contact. But when walking, I don't actually lean too heavily on the crutches, if I can avoid doing so; I use them for balance — because falling down sucks like a nuclear-powered Hoover.
So I made it to the Neurology Clinic in one piece. The doctor poked at my surgical scars, had me take a few steps unsupported, and pronounced himself more than satisfied with my progress. Most importantly, he gave me the go-ahead to proceed with physical therapy.
I then made the trek back out of the clinic. I figure I covered perhaps half a mile yesterday; my legs, hips and butt are certainly complaining about it today.
Since the surgery, I've regained most of the feeling in my legs and control of most of the muscles I haven't been able to use for the past year. This is a huge improvement, but it does come with a downside: my legs hurt. Not all the time, but the muscles, particularly the hamstrings and calves, are as tight as a bowstring.
I've already made the appointment for my first PT session, on Friday. If I survive it, I'll try to describe it.
For those few folks who may have been wondering about how I'm doing since the surgery... well, I've been back at work (telecommuting, of course) since last week, since only five days after the second surgery, which might give an indication as to the relative rapidity of my recovery.
I have a pretty cool scar on my head, with lumpy bits of hardware underneath. It turned out that none of the installed hardware is any kind of memory upgrade. Dang. You'd think that a $5000 piece of hardware might have a little extra RAM thrown in. I guess not.
The entry point on my abdomen is healing up again after they "unzipped" it for the followup surgery. Still looks bad, but it should be fully healed in a week or so.
I'm walking around the house on just a cane about 95% of the time, reverting to crutches only when my legs are too stiff or sore or tired... none of which is really unexpected, given such a long period of non-use. I also still use the crutches when leaving the house, but that's mostly a safety issue; better to have them and not need them than to need them and not have them.
I can occasionally take a few steps unsupported. No, that's not quite right... I don't use the cane for support, but for balance, as a second point of contact when I pick one foot up off the floor. WIth the cane, I'm moving pretty well, but I'm still rather wary of falling over. So far, though, no accidents.
Basically, I'm back to where I was in about May of last year, and still improving. I don't know how much improvement there will be, but I really do not expect I'll ever be back to 100% — I suspect there is some nerve damage here. Still, I'm waaay better than I was five weeks ago, and improving rather than declining. I may end up (as I have sort of suspected I might) using a cane permanently, but I can live with that, considering the alternative.
Finally, my hair is growing back. Every time I cut it all off, I get a little concerned that it might just give up and refuse to grow back. Thus far, though, only the hair on the top of my head has done so. The remainder is coming along just fine.
Home is the sailor from the sea,
the hunter from the hill. *
And the computer geek from the hospital.
Yeah, try making that fit a rhyme.
Update: Maggie nails it in the comments.
Alternate title: "Dammit dammit dammit."
The visit to Duke today went about as expected, with a lot of hurry-up-and-wait-ing. Blood work, x-rays, and a cat scan. I forgot to bring Mycah with me, but fortunately, they had their own cats.
The long and the short of it is, the tube that runs from my head down my neck, over my collarbone, down to the area of my liver, and thence into the peritoneal cavity has in fact not stayed inside the peritoneal cavity. The imaging today showed that it retracted out and is neatly coiled above my liver, which accounts for the softball-sized swelling there.
How it did that, I don't know. Maybe they neglected to take into account the fact that I'm way taller than average.
Because the fluid is deposited between the skin and the muscle, it can't be disposed of as effectively as if it were being dumped in the abdomen, so it builds up. The pressure is about the same as in my head, so the cerebro-spinal fluid can't drain out, so my condition is much like it was before the shunt surgery.
The upshot is, they have to crack me open again and place the tubing back inside the peritoneum. My skull is fine, so they ought to be able to do this by unzipping the scar on my stomach.
Which they're doing first thing tomorrow morning.
Egads. I never seem to get a chance to plan ahead for these things.
It's a simple enough procedure that it could be out-patient work, but I'll probably have to spend tomorrow night in the hospital. Ugh. I hate the beds there. At least the nurses are cute.
There is an odd lump that's formed in my abdomen, above my liver, under the surgical scar. It's about the size of a softball, and pretty firm. I think it's the drain output, which ought to be inside the peritoneal cavity; this lump is outside.
I think it's causing a drainage problem, perhaps a back-pressure issue. I've lost some of the progress made since the shunt was installed — the legs exhibit returned muscle weakness, as well as some neuropathy, including numbness and an occasional spasm.
So, it's back to the hospital for me today — blood work, x-rays and a CAT scan. Hopefully it'll be a simple thing to remedy and the shunt flow can resume.
So, here's what the nugget looks like these days. The shaved look is much more fashionable, I think, than the partially shaved look.
OK... here's the photo...
And yes, yes, I know — there's more than a bit of thinning up top there... but I'll staple Mycah to my head before I ever wear a rug.
I get those stitches out this afternoon. I'm going to have a wicked cool scar.
Rather than merely bury a link in an update to the previous post, as I did originally, I'll add it here separately.
Yesterday while giving a status update, I asked the neurosurgeon for more information about the implant. It is a "Codman programmable shunt." Googling led to this website which describes the procedure.
Nifty. It there anything that isn't on the web?
I keep saying variations of "the doctors drilled a hole into my skull." In fact, they did a bit more than that. What follows may be a bit disgusting, but hey, you're only reading about it. I had it done to me.
Despite the plethora of road accidents — it was a black ice kind of day — we (Mom drove, of course) got to the hospital a few minutes after 7:30 that morning, and let the valet parker take the truck. I've never noticed valet parking at a hospital before, but it makes sense.
I plopped into a wheelchair and we headed to the part of the facility where the pre-operative screening is done. We waited for only about three minutes to be called; you'd have thought there was some sort of hurry. The nurse who did the screening had paperwork for me to fill out, and a lot of "are you allergic" and "have you ever" questions for me to answer. Blood was drawn at least once, and then we were off to Radiology, where X-rays were taken of my head. Interestingly, that was the first time since this whole thing began over a year ago that plain old X-rays were taken.
Then we were off to the pre-op waiting room. At Duke, this meant a trip by tram from one building, half a mile to the next. They're sort of spread out, there.
There were a lot of people at pre-op, waiting for whatever particular doom had summoned them to the hospital that day. Once I'd checked in at the desk, we (still Mom and I) waited with all the other folks, but I was getting pretty uncomfortable; my legs were in a bad way. One of the nurses graciously asked it I'd like to go lay down, so at that point Mom and I parted — I didn't see her again until well after the operation.
The moment of fate had arrived. It was time to switch out of civvies and into hospital uniform: the standard ill-fitting and all-revealing gown, complete with footies that didn't come close to covering my size-15s. I was wheeled into the pre-op room, in which there were about a dozen other folks already on gurneys waiting for their respective procedures. I was set up with an IV jack in my hand (no actual drip at that point) and waited.
The anaesthesiologist dropped by, asked a few questions, had me fill out some paperwork. The surgeon dropped by and drew an X on my head with a magic marker. At least I think it was an X. It might have been a smiley face, for all I know — I'd removed my contacts by then, and in any event I could not (and, amazingly, still cannot) see my own scalp without a mirror.
Suddenly, it was time. A pair of burly orderlies came along, plugged a bag of something into my IV, and wheeled me off to the O.R. In under a minute I was on the operating table with a mask on my face being asked to take four deep breaths. I managed two before the lights went out.
This is where I would describe the procedure in minute detail, if I'd actually witnessed any of it. [Update: see my followup post.] The macro details, I can tell you about.
The shunt was installed above my right eye, at about the "one o'clock" position above my forehead. I haven't actually seen one, but it's a piece of hardware that feels like it's maybe 3" x 0.75". The big part is under the skin, flat against the outside of the skull; some smaller bits go inside the skull. The shunt is magnetically adjustable; they can increase or decrease the flow rate as needed without opening me up again. In case they ever need it, there's a facility for the extraction of cerebro-spinal fluid via syringe through the shunt.
As Steve notes, perhaps it would have been nice if they could have installed a device to allow the direct insertion of booze. I wish I'd thought of that.
From there, a tube was run under my skin back past my right ear. In order to get the tube to its final destination, a hole was made in the skin behind my ear, and using (I presume) some sort of long rod, the tube was driven down my neck behind the ear, then over my collarbone, down to my abdomen — all under the skin, of course. To get the tube into my abdominal cavity, the surgeons opened me up just under the ribcage, got the tube inside the cavity, stitched the muscles up, then glued the wound shut. It looks quite a lot like a gallbladder surgical scar.
I'll leave you with a photo of the aftermath:
[If I'd thought about it, I'd have asked them to shave my whole head, but they clearly shaved only what was necessary. The combover to handle such a tonsorial disaster hasn't yet been built, so once the bandage in the photo came off, I shaved the rest of my head to match.]
I woke up in the recovery room. My mouth was as dry as the Sahara after a particularly severe drought. I was, of course, rather fuzzy-headed; they had, after all, shaved part of it... but I was somewhat addled, too. After an hour or three — I have no idea exactly how long it was — they were relatively certain I wasn't going to be bleeding all over everything and everyone, so I was wheeled off to my room, where I was pumped full of antibiotics and kept overnight before being released. Mom was there waiting, the very soul of patience.
And so I was home. It's been a week, and I'm vertical most of the time now; I periodically get light-headed enough that I have to go lay down, but that's happening less and less often. I'm off the hydrocodone, and despite the dizziness episode a few days ago, I think I might actually be ready to go back to work in another week.
This is not something I would have wished on anyone.
Yesterday, I became the definition of pure suckage.
Things were going well, really well — I'd been up much of the day, my head and neck weren't hurting much.
Then, right after dinnertime, wham.
[No, I don't mean WHAM! — things were bad enough without George Michael and Andrew Ridgeley showing up on my doorstep.]
I began to feel a bit dizzy, so I headed back to my bed. In the time it took me to cover that 20 foot distance, I was barely able to stand at all. The room was spinning around me, and I fell onto the bed and lay there motionless, begging God to make the whole house stop spinning.
I have had an ear infection-based case of vertigo in the past, and this felt exactly like that... except I didn't have the pressure in the ear I associate with an inner ear infection. I did, however, have a fever and the sweats.
It was misery. I couldn't sleep, and for about five hours, I couldn't move a muscle without setting the entire state to spinning around me. Mom came in before going to bed herself, and did me the courtesy of locating a trash can next to the bed... just in case, if you take my meaning.
Around about 2am, what I was afraid would happen, happened: I had to get up to use the restroom. It was a rather short stumble from point A to point B, but I managed to come close to falling on my face about four times. By the time I made it back to my bed, the entire country was spinning around me.
I had to remain sitting up for a few minutes. My stomach had begun to rebel, and it was a very near run thing, I can tell you. I was certain I would not have been able to make it back to the bathroom in time.
Finally — perhaps an hour (spent mostly in Hell) later, I was able to lay down again with a reasonable certainty I wouldn't be making any untoward messes on my bedroom floor. North America continued to whirl around my brain.
I was as miserable as I think I've ever been... and I've had gout, as you may recall. My head hurt; my stomach, while not exactly rebelling, was not happy either; I was running a fever; I was sweating like a Kennedy under oath. The Western Hemisphere rotated inside my skull.
Finally, sometime I think around 4am, my fever broke, and I was able to sleep.
So ya, I had a pretty crappy day. And if I ever act like the world revolves around me, well, maybe I earned it for just a little while.
Recovery continues apace. By "apace" I mean that, despite having had a hole drilled into my skull, I haven't actually died, and am, in fact, continuing to improve, slowly but surely.
I'm still in a sort of "good day/bad day" mode. Wednesday was a pretty good day, and I was able to sit upright for as much as 90 minutes or so at a time. Thursday, on the other hand, pretty much sucked, and I spent the majority of the day face-down on the bed moaning... which I suppose makes it like most days, though this time I had a legitimate reason. It's only been a week, after all.
The drugs (Hydrocodone, 1 or 2 every 4 hours as needed) seem to be helping a lot, too. Woo... hooooo....
My bandage came off — it lasted a couple days longer than they predicted.
I am going to have an awesome scar.
Did anybody happen to get the license number of the truck that hit me?
The operation seems to have gone well, since they let me come home the day after. There's a lot of recovering left to do, of course, but I can already tell there's improvement. I can control muscles in my legs I haven't been able to control in months. I still have to use crutches during my forays into verticality, mainly because the leg muscles are so weak, but partly because I seem to have lost a bit of coordination since the last time they all worked properly.
Right now, though, I can only sit or stand for about five minutes at a time. It's not actually my head that hurts; something in my neck is not quite right, and after just a couple of minutes upright, the pain is enough to force me to lay down. It's probably something to do with the way the surgeons had to contort me and strap me down in order to perform the operation, more about which later (with a post-op picture, even.)
At any rate, I can't spend much, if any, time at my desk/PC. Mom loaned me her laptop so I could write and post this entry from the comfort of my bed. Thanks, Mom.
In fact, without Mom being here to help, I'd be pretty well hosed. She's been a life-saver, figuratively and almost literally. Plus, her cooking is way better than mine.
More later... but probably not today.
I feel like I lost a fight with a Mack truck, but I'm home.
I was planning on continuing to do daily posts counting down the days over the next week leading up to my surgery. However, because of a call I got from the folks at Duke about an hour ago, that plan has to go by the boards.
They're drilling me tomorrow.
Check-in time: 0730. I should be home on Saturday, with a week or two of downtime after that. It seems pretty fast to me, but I suppose it's not all that complicated a procedure, as brain stuff goes.
I'll just take this opportunity to say thanks to all of you for your support during this... well, ordeal seems too strong a word, freighted with too much meaning. It's been a test, though, most definitely.
The dental crisis is over. A tooth was extracted — it couldn't be saved — and I had an appointment today to remove the stitches from my mouth. Today was the fastest and least expensive thing I've had done to me all year. $8.00 for 15 minutes work.
Compare that to the work done ten days ago, which involved about five hours in the chair, and left my wallet rather a great deal lighter and me feeling like I'd been hit in the face by a brick. At least I got codeine out of the deal. It was, unfortunately, necessary for a few days.
Now that the abscess has been
removed eradicated destroyed dealt with, we're on track for a brain surgery date of December 13th, two weeks from tomorrow.
At least it's not on a Friday the 13th. Not that I'm superstitious, but I have to wonder if any of the people in the O.R. might be. I expect not, but you never know.
The countdown resumes.
While talking this morning with the Duke hospital finance people (when you pay out of pocket, it needs to be arranged in advance, apparently) I found, much to my displeasure, that my surgery date had been cancelled because of the dental issue.
It would have been nice if they had told me about it.
The fact that the dentistry problem — an abscess, you may recall — gets resolved tomorrow apparently has no bearing on the matter. They just up and cancelled me.
It would have been nice if they had let me know.
So now I have to reschedule the surgery — no telling how long that's going to take — AND I have to reschedule my outage from work, and so on.
It would have been nice if they had said something about it.
Dammit dammit dammit.
I think I've mentioned before that one of the things I've been inspired to do lately is to dispose of much of the accumulated cruft taking up space in my attic. Having been on the verge of being diagnosed with a fatal disease tends to put things in perspective.
Much of what I'm disposing of might be considered prime eBay fodder. So, yes, I'm selling things that some people would look at as collectible, some things it pains me a little bit to part with. Books, old hobby materials, and my huge collection of board-style wargames from the heyday of Avalon Hill and SPI.
Too bad. It's outta here. I'm de-complicating my life, and that means it all goes.
What no one ever said, though, was how much of a pain it is to list things on eBay. I mean, everything listed needs some sort of reasonably accurate description, and most of what I'm selling has to be minutely inventoried, to make sure the myriad small bits are present. So all day, I've been counting and counting and counting. Egads.
One really ought not to advertise something as being 100% complete if it really isn't.
Being tagged a fraud would be a very bad thing.
Unless one really is a fraud.
Which I'm not.
As the days count down to my date with a neurosurgeon, I still have things to get done. Foremost among them is getting this [expletive deleted] tooth fixed. If it's not fixed, I don't get to keep my surgery appointment.
So today I spent another afternoon in a dentist's chair, having small mallets whacking my teeth one by one. "TING! Does that one hurt?" "No." "How about this one? TING!" "No." And so on.
Apparently, the meds I got last week are having an effect, but they aren't a fix. I'm going to have to be re-root-canalled... and if that's not going to do the trick, I'll have to lose the tooth.
To keep my scheduled surgery date, I'd consider letting them pull all my teeth.
Just over a week to go until I let a masked man drill into my skull, and I'm still carrying on as usual. Or as usual as things have been over the past year, anyway. Another night at work, keeping the Internet running.
The only difference in my routine is that I answer a lot of "good luck, best wishes" messages. There really was no way to keep it quiet that I'm going to be away for a couple of weeks, since a call had to be put out for volunteers to cover my scheduled hours.
I figured pretty much everyone already knew that I've been having difficulties — I haven't worked a day in the office yet this year, for instance — but there are still people who come across as surprised. I've been in the hospital twice already this year, and people have had to be found to cover my hours both times. I think if one of my teammates was in my position, I'd remember it.
Then again, we are all geeks. Non-technical matters can go right past us. It's just the way we are.
Counting down the days until surgery, knowing it is finally going to happen, is probably going to make the wait seem interminable.
In the interval, I'll be carrying on as usual. Work, sleep, work, sleep....
Come to think of it, the two-week expected recovery time will make a nice little break from the ordinary routine. Not that I expect to be doing anything exciting, of course.
Except, perhaps, for throwing away my crutches.
It's official. I'll be having surgery to install a shunt on the Monday the 19th. Time to fire up the ol' power drill....
I'm eager to get it done for a lot of reasons. I'd like to be able to walk again, of course. Just standing up unassisted would be a huge improvement. It would be great if I could drive my own truck, too. As soon as I can drive my Mom to the airport, I will drive her there. She has been here for several months and both wants and needs to go home to Santa Barbara. I certainly cannot blame her.
Not that I don't appreciate her help over the past several months. I do. Boy oh boy, do I. I'd have a damnably difficult time of things without someone in the house to help out with the tougher tasks... like, say, cooking... or pushing a vacuum cleaner around, or going out to the mailbox. I just wish I could get these sorts of things done without imposing on my Mom.
At the same time, as a middle-age man, I really don't need my mommy living with me any longer than necessary. It reflects poorly on my adultness.
Is adultness a word? There must be a word out there that means "having the quality of being an adult," but these days I'm not quite as sharp as usual. That is one possible effect of hydrocephalus... or I could just be going senile in the ordinary way.
We'll see if my thinking improves after the surgery. Which I need like I need a hole in my head.
[Insert rimshot here.]
I think I get to own that joke in perpetuity.
Ten days, and counting.
As if I didn't already have enough to worry about, I've been hammered by a toothache this week. A trip to the dentist yesterday revealed that it's due to an abscess.
Feel free to joke. You'll not top this one.
When one's doctor turns out, as mine has, to be a world-renowned specialist, the concept of "as soon as humanly possible" doesn't necessarily mean "soon."
In this case, we're waiting to see if he can squeeze me into his schedule for surgery as soon as next week, but that remains iffy. There has to be some pre-surgical workup done, of course, though I don't really know the precise nature of what needs to be done pre-op.
When I do go in for surgery, it might be as quick as just an overnight stay. The surgery itself, I'm told, is pretty simple, as such things go. Thirty minutes to an hour, I hear. One day of recovery time in the hospital, and then home.
When the prospect of a shunt was first raised, one of the questions I asked was, how much downtime will be required afterwards? In short, how soon can I go back to work? The first answer rocked me back on my metaphorical heels — six to eight weeks. Holy smokes.
I explained that not only do I work from home, but that my work consists mainly of looking at computer monitors and typing, with only the occasional phone call. Armed with this knowledge, the docs told me that I can estimate a week or two of downtime at home. I could, in theory, be walking by Thanksgiving.
That presupposes that I can actually get onto the surgery calendar sometime soon. Maybe they can wedge me in next week. I surely hope so; this has gone on long enough.
The phone rang earlier today, and I was surprised (to put it mildly) to hear my neurosurgeon on the other end of the line. He was in his office catching up after returning from the annual conference (Research Update in Neuroscience for Neurosurgeons) for which he was Director, and was making calls so his desk would be clear on Monday. After a minute or two of polite conversation, he got to the point.
Based on testing and on my symptoms, a shunt is not a sure thing for a 100% fix, but it will yield positive results. The thinking is that there are probably two separate things going on in my central nervous system, and that surgery will alleviate one of them, allowing the other to be looked for without the complication of hydrocephalus.
Thus the doc's recommendation is that I have the surgery to install a shunt. Any other condition notwithstanding, it will improve my physical capability.
It may be brain surgery, but the decision to have it is, for me, not exactly rocket science.
I think we'll be scheduling this to happen as soon as humanly possible.
You might have noticed the button I've put up on the site.
And surely you're asking yourself, "why, in this day and age, would a person not have medical insurance to cover those costs?"
Long, convoluted story. Or maybe not so convoluted.
I'm a contract employee with no benefits; in the tech industry, this isn't altogether unusual. When my current medical crisis began, though, we all thought it was related to an old Army back injury, which would be covered by the Veterans Administration. Then last autumn, I was informed by my management that my employment status would be upgraded and converted to regular (benefitted) at the start of 2007.
In short, I had no need to buy insurance. I was covered for this. Then, two things happened.
First, the doctors changed their assessment of the cause of my medical problems. No longer could it be attributed to my VA-coverable injury, so naturally the VA will not cover my medical care. I don't begrudge them this at all; that's just the way things are. I checked this every which way; the only way I could receive treatment from the VA would be if I were unemployed and homeless, which isn't about to happen.
Second — and this is the irksome bit — someone at the VP level at my place of employment decided that the best way to make his budget numbers look good to his boss was to freeze all personnel actions. I'm not the only person who has been waiting since January to receive an overdue promotion or even conversion to "regular" status.
This, mind you, in an organization and at a company that professes to believe that its people are its most important asset. They sure have a funny way of showing it.
Me and a dozen of my coworkers have had our careers put on hold, just so a VP can maximize his annual bonus. I hope he chokes on it.
I'd have walked out the door to a new employer months ago, except for the inconvenient fact that I can't actually walk. As soon as I can walk, though, I will walk. But not before I visit the VP and leave him my crutches as a reminder that "personnel actions" have a human cost.
So that's where things stand. I'm at a job I can't afford to leave and at which I cannot afford to stay, and I can't get new employment until I can actually walk into a job interview.
Of course, I can't now get insurance to cover this now-preexisting condition. This is what is known as "slipping through the cracks." Or "bad luck." So be it. As I have noted before, if we had a Hillarycare-style system, I'd still be waiting to see a neurologist; indeed, it probably would have been illegal for me to get this far by paying cash.
In the meantime, I've run up tens of thousands of dollars in medical bills, all paid out of pocket. The total is likely to double before all this is over, however — especially if they're going to do this to me. My pockets only go so deep... and I've already reached the lint.
And that is why I've put the tipjar/begging bowl front and center, and right here:
Probably the brain surgery.
I've been back from the hospital for about 32 hours now, and I think I've slept about 24 of those hours.
Part of that is the near total lack of sleep I had while actually an in-patient. Not only are those hospital beds terribly uncomfortable to begin with, but they have added inconveniences which maximize the discomfort for someone like me.
- They're too short. At 6'8", I am used to sleeping with my feet near or hanging off the end of the bed. I'm just used to it. Not so this week, though; the hospital rack had a footboard that constrained my feet, which is a serious obstacle to rest.
- The beds are also designed to force a person to slide down from the head end towards the foot. Any upward tilt of the head section leads to an inexorable involuntary migration towards the foot end. Perhaps this explains why they have a footboard. No hospital wants to be responsible for its patients slipping the long way off the bed onto the floor.
- Perhaps worst of all, though: the beds are designed with some sort of air compression system which is designed to reduce or eliminate the problem of bedsores by inflating sections of the bed and causing the patient to unconsciously shift his weight around to keep from falling out of bed. This would be fine, except that the air compression unit sounded approximately like a B-52 taxiing towards its runway. (Mom thought it was more like an F-15, but I'm not about to quibble.) It never stops, and you never get used to it.
That's just the bed. Have I mentioned what they actually did to me there?
I got to my room after about 4 hours of dithering. They said be at Admitting at 9am. OK, fair enough, we were... and then were kept waiting for about an hour, then another seemingly interminable wait for a wheelchair escort up to the room.
Once in the room, I met my day shift nurse, a real nice girl (indeed, the nicest thing about the entire stay there, named Melissa, very cute in a Shirley Temple sort of way — not The Littlest Rebel Shirley, more like Fort Apache Shirley) and then we commenced to wait for the Physical Therapist, so that I could be tested and a base level of neuromuscular performance could be set. 'Round about 3pm, that person showed up. So essentially, I could have slept an extra five or six hours instead of dragging my night-shift-working ass out of bed at 0630 that morning.
The PT testing complete, it was back to my room — a private room, thankfully — to wait for the lumbar puncture. An IV antibiotic was plugged into my right forearm, and then the attending neurologist, Torquemada by name, arrived and set to work with a will. A bit of topical anesthesia at the insertion site, and then....
Pain. Pain. PAIN.
Perhaps not the worst pain I've ever experienced, but the margin was small, and gout isn't voluntary. I mean, I didn't have to show up at the hospital. No one made me. I think they'd have stopped if I'd asked. There wasn't a prearranged safety word, though. Odd, that....
It would have been over quicker, but along with my being extremely tall, my bones, vertebrae included, are larger than a normal-sized person's. Consequently, it took that particular agent of the Spanish Inquisition longer than usual to get the tap into place; he had farther to go. And he had to use a bigger-than-usual needle to get the catheter into place in the spinal column. He didn't seem disappointed, if the chuckling was any indication. And I could feel every second of it, though oddly, I felt it in my hips rather than in my back. It went on and on and on and on for what seemed like hours, until... nothing. It was over.
Well, almost over. I had to be stitched to keep the catheter in place. The insertion had taken so long that the topical anesthetic had worn off. I felt the stitching... though compared to the tap insertion it was a sort of bliss. Sort of like the lesser agony marathoners describe as a "runner's high" — still miserable, but the endorphins must have kicked in.
The catheter having been inserted and the flock of Jesuits having departed, taking their branding irons and thumbscrews with them, I was left on my own. For the remainder of the day and well into Tuesday, the entirety of my role in the enterprise consisted of laying in place while leaking cerebro-spinal fluid into a bag and having the IV antibiotic (which worked on some sort of incendiary principle, given the burning sensation) changed every six hours.
Due to the aforementioned bed difficulties, this was not as easy a proposition as might be supposed. Compounding the problem was one of my primary symptoms: when I lay flat on my back, my legs spasm uncontrollably. I didn't sleep much.
The therapist came back for part two of the testing — the idea being that if my neuromuscular responses improved after the fluid in my brain was reduced, it would be a good indication that installing a shunt might be the solution. There was measured improvement, but not enough to satisfy the neurologist. I had to stay another night.
By that evening, the IV antibiotics had corroded the vein in my right arm, so it was relocated to the back of my left hand. They were apparently saving my left arm for blood withdrawal... a savings of which they made good use.
That morning my fluid levels were lower than ever. Having again had no sleep, I repeated the tests with the therapist. Despite the lack of sleep, there was more measurable improvement, but still not enough to satisfy my neurologist. So I had to stay yet another night. I was, to say the least, not thrilled at the prospect.
That night, I didn't even try to sleep. The night nurse came in just before midnight to plug in my dose of napalm (after relocating the IV yet again, to the back of my right hand) after which I passed out for maybe two hours. From 2am on, I read one of the books I'd brought with me and waited for the Thursday day crew to show up.
First thing in the morning, the therapist showed up to test me again; again there was improvement.
In rapid succession the attending neurologist (the doctor previously known as Torquemada) removed the drain from my back and stitched me up; my neurosurgeon's nurse came with a stack of papers to get me out of the hospital; a wheelchair showed up at my room, and I was whisked away. Fortunately, my ride (hi, Mom!) was already there with me, so I wasn't subjected to being unceremoniously dumped on the sidewalk in front of the hospital. Almost as soon as I got home, I collapsed on my bed and actually slept.
And that was that.
I'm still quite sore, and the improvement shown during the hospital testing has reversed itself now that my spinal fluid is not being actively drained.
I expect we'll have a recommendation from the neurologist and neurosurgeon next week. Pins and needles time, people.
You — yes, you! — can help.
I'm quite exhausted and extremely sore, but most importantly (for the moment, that is) I'm very much at home.
The lumbar puncture and draining is complete, having gone three days rather than the originally-anticipated 24 hours. The results seemed to me to be positive, but the final determination will, of course, be up to the neurologist and neurosurgeon.
I can definitely tell that my fluid levels are filling up again, though. The tests this morning showed definite improvement, but just 6 hours later now, my legs are again all but useless. Some of that can be ascribed to the fact that I've been off my feet and confined to a bed all week, but I think the fluid explains more.
I had no more than three hours sleep per night while I was in the hospital; as soon as I got home I slept for about two hours. Right now, I'm off for another date with my pillow.
(This entry brought to you by Russ' sister, via telephone)
There are many things worth taking one's time to enjoy. A spinal tap is not one of them.
On the plus side, at least I get another day's worth of hospital food.
Should be back tomorrow.
P.S. The beds here are so uncomfortable, they should ship a few dozen to Guantanamo. Then the International Red Cross would really have something to complain about. One does not so much sleep on them as pass out due to exhaustion.
Monday, bright and early, I head to Duke for a three-day hospital stay.
First I'll see the physical therapy folks, who will do some tests on me — setting benchmarks with actual numbers.
Then, I'll again undergo a lumbar puncture. This time, they'll hang a bucket on me and leave the drain open for 24 hours. Because the body can produce as much as a pint of cerebro-spinal fluid per day, they want to drain enough so that the effect of vastly-reduced CSF volume can be judged. I'll be staying overnight.
The next day, after the tap has been removed, it'll be another trip to see the PT people, who will repeat the initial tests on me, so as to compare the numbers with the previously-established benchmarks. The expectation is that my neuromuscular performance will be better after the draining.
And that should be the proof that hydrocephalus is the problem.
I'll then spend another 24 hours at the hospital, specifically to ensure that I don't get an infection and that the puncture site doesn't leak, which could have moderately dire consequences.
If the test results are as anticipated, we'll schedule surgery to install a shunt sometime in the following week or two. They tell me it's a 30-minute operation (which I rather doubt, but who am I to say otherwise?) followed by 24 hours as an in-patient, after which I can go home and spend between one and eight weeks recovering.
Yes, up to eight weeks. It's brain surgery. I just hope that they don't accidentally remove my math or language skills.
Improvement, however, should begin virtually immediately after surgery. I'm really looking forward to being able to walk again. Then there's physical therapy. There are more than a few muscles that have atrophied and are going to have to be worked pretty hard to get back up to speed after all these months.
That is, if this upcoming test gives a solid result. It had better.
I've begun having headaches pretty regularly.
If you're new to the story, you can read the entire tale of woe by going here, starting at the bottom, and scrolling up.
As an aside, I'll note that this entire thing has been horrifyingly expensive. Not so bad that I can't get the necessary medical care, but as a contractor at my workplace, I'm not blessed with insurance coverage. I've missed a somewhat substantial amount of work, with more absenteeism in the foreseeable future.
[No, I'm not interested in having a national healthcare system. If we had that, I'd still be waiting to see a neurologist.]
So, if you ever wanted to hit a tipjar, now might be a good time. I promise I won't pull an "Andrew Sullivan" on you and disappear for a month.
Whether or not that's a good thing remains to be seen.
Yesterday was the long-awaited appointment with the neurology and neurosurgery folks at Duke. I went with the expectation that something, anything concrete might result, diagnosis-wise.
Oh, ha ha ha... right. As if anything has gone the way I've expected or hoped with this whole thing.
After a short and to-the-point physical examination, the neurosurgeon got on the phone with my neurologist — and again, I remind you that these guys are the best to be had in this area, among the best in the country — and came to two conclusions.
First, what I have is almost certainly not CIDP. In a way, this is good, because while it is treatable, CIDP is an auto-immune disease that probably would recur in the future. On the other hand, if it had been CIDP, I could be fixed fairly quickly.
Second, another test is necessary... and not one of those fun tests that wind up telling you whether you are a "Fall colors" or "Spring colors" person. No, this will be a repeat of the spinal tap, writ large. A full 24 hours in the hospital, being drained, with physical tests before and after to determine if my nerve and muscle functionality improves after the removal of larger quantities of spinal fluid.
I am not looking forward to this one, except insofar as it might give us the answer. It'll probably leave me laid up for a few days, but it could conclusively prove whether the original diagnosis of hydrocephalus is correct.
Could. All the things that have happened over the course of this episode have been thought to lead to one conclusion or another, and yet none have been fully determinitive. I'm still half convinced that I'll end up with a disease named after me.
It's getting to be awfully difficult to remain optimistic, but I'm trying. I really am.
I could ramble on about all the details of the day, about just exactly how much fun it is just to get ready to go out of the house, about the conversations at the doc's office, but no.
Short version: a new contender for the "What Vexes Russ" title has popped up on the radar: Chronic Inflammatory Demyelinating Polyneuropathy.
CIDP is an auto-immune disease, so it suddenly becomes possible that I've been doing this to myself all along. It is, however, treatable.
This isn't a sure thing at all, just a possibility.
Next week: Duke Med.
Yesterday, a day not normal, while I lay prone, dressed informal
in a backless gown (hospital's), central nervous system at the fore
While I lay there, nearly napping, suddenly there came a tapping,
As of some one gently tapping, tapping on my spinal cord.
'Tis some medico,' I muttered, 'tapping on my spinal cord —
Only this, and nothing more.'
As I lay, the fluid draining, felt like I'd received a caning
legs en fuego, hips in pain, too, though there was a total lack of gore
Now it has become the next day, and oh so much to my dismay
hips and butt hurt in the worst way; truly, they are muchly sore.
After this "adventure" awful, my doctors do I implore:
'nother such test? Nevermore!
(I am so sorry for that.)
I'm off shortly for my spinal tap. They'll be removing some fluid for use in mystical voodoo rites... and, one supposes, testing of some sort.
I don't pretend to understand what they'll be testing for. Even as relatively well-informed as I am, this is all starting to get into Clarke's Third Law territory.
It seems amusing to me to think that if my problem is an overabundance of cerebro-spinal fluid, that taking some out might actually alleviate my symptoms to a minor degree. Not that I actually expect that, mind you....
Update, 6:30pm: Well, that purely sucked.
I'll be in my bunk.
I had an appointment with my regular doctor yesterday, during which he expressed some frustration at the delay in being able to get in to the neurologist at Duke. In order to get another set of eyeballs on the problem I was referred to yet another neurologist, who — amazingly enough — didn't have a 4-week waiting list.
The result of this morning's examination by this new neurologist: I get to have another spinal tap, though this time they'll be removing fluid to be tested, rather than injecting radioactive schmutz. What they'll be testing for, I really don't know. My curiosity about such things has been on the wane lately; I'm tired of it all.
Eric S. Raymond wrote in his noteworthy essay "The Cathedral and the Bazaar" that, with regard to software development, "given enough eyes, all bugs are shallow." I hope the same holds true in neurology with regard to diagnoses.
I had another appointment with my neurologist yesterday. A sort of "let's take another look at everything" visit.
He's no slacker. He's won awards, and apparently he is the doc of choice for area athletes.
Right away, MS and ALS were conclusively ruled out of contention; though the doc (and, to be honest, I) expected MS, there was no evidence whatsoever on the MRIs to indicate either.
The cisternogram two weeks ago ruled out hydrocephalus. I do apparently have quite large first and second ventricles, though there is no readily identifiable cause for such. The third and fourth ventricles are normal. The enlarged ventricles might possibly be congenital, or might have been caused by something else sometime in the past (though I do not seem to ever have had any illness to explain the matter) but in any event the neurologist believes it is not active hydrocephalus.
Based on the tests he did in the office yesterday, whatever it is that I have is indeed a problem with the central nervous system. How can he tell? When you go to the doctor and he taps your knee with a hammer to test your reflexes, that's just one of the reflex tests that can be done. Do the same to your Achilles tendon or to the inside of your knee, and you're testing the central nervous system... and mine isn't working quite right.
On top of that is the ongoing and increasing muscular weakness in my legs (though my upper body strength is as good as or better than usual.)
Try this little experiment: sit in an ordinary chair. Then lift one foot off the floor by raising your knee straight up. Easy, right?
Not for me it isn't. I cannot do it at all, which reflects extreme weakness in some muscle or other in the hip area. Nor can I squeeze my knees together or push them apart with any force. I can barely use my hamstrings; my quads are doing comparatively well, but less than half of the muscle mass reacts when I try to do leg extensions.
Interestingly (to me, at least) some of the muscles which don't react to voluntary impulses do occasionally spasm or cramp pretty strongly. There's something there — I just can't control it.
Further, nothing we've seen rules out an additional diagnosis of peripheral neuropathy. The prospects of my ever again walking without a cane or crutches seem, to me, to be increasingly remote.
On the plus side, I'm finally getting a handicap tag for my truck. At least I'll get decent parking wherever I go. It's only good for six months, though — we're trying to be optimistic, I suppose.
More importantly — most importantly — I'm being referred to Duke Med for what might be called an extended second opinion. Seems my neurologist is friends with the head of neurology there. Excellent. I hope in this case two heads will in fact be better than one.
I went to see my regular doctor yesterday, on a sort of "touching bases" visit. As he is not a neurologist, I didn't actually expect any answers.
He did, however, talk to my neurologist, who has apparently declared himself "baffled."
I see the neurologist again on Friday; he'll be doing another exam, just in case something has been missed in previous exams. I'm hoping there will be an "a ha!" moment. And no, I don't mean the 1980s pop group from Norway, even though I think their music video was pretty cleverly done.
I have a bad feeling that when all this is done (assuming it ever gets done) I'm going to end up with a disease named after me. [Note to my little brother: no, not "geekitis."]
I'll be seeing my regular doc again in a few weeks. Why, I'm not sure, but it will give me a chance to ask about the TV, which I completely forgot to do yesterday. Oh, and about a handicap tag for the truck. I figure if I can get decent parking, I ought to do just that.
If a doctor prescribes physical therapy, could home gym equipment (Nautilus, Bowflex, what have you) then be tax-deductible as a medical expense?
Followup, 11Aug: While I'm at it, maybe I can get a prescription for a bigscreen TV. I'm not quite sure why a doc might prescribe one, though.
I've just received a call from the neurologist's office. Having seen the results of the cisternogram done earlier this week, there is now some doubt as to the accuracy of the hydrocephalus diagnosis. Specificaly, the cisternogram showed no buildup of fluid in my brain.
Something is definitely wrong; my legs work rather less than well, after all. Hardly at all, really. But having ruled out MS and ALS, and now pretty much ruling out the hydrocephalus... what is left? Perhaps we'll know more after my next trip to the neurologist.
Damn, this is aggravating. Now we're back to not knowing again.
The nerve conduction test... let's just say I hope I don't have to go through that again any time soon.
Here's how the test goes: electrical sensors, similar to those used in electrocardiograms, are affixed to various locations on the body (the legs in my case); machine-generated electrical impulses are then sent down the nerve pathways.
In short: they tazered me. Repeatedly. For half an hour. I think they enjoyed it.
Damn you, Luigi Galvani. Damn you.
No concrete results yet, of course (Same day? Are you kidding?) but mutterings of peripheral neuropathy could be heard from down the halls.
Well I'm not uptight
Turn me on tonight
'Cause I'm radioactive (radioactive)
The lumbar puncture Monday went rather well. Though I was at the hospital for perhaps two hours, the procedure itself took only about ten minutes, and contrary to my expectations, wasn't even a little bit uncomfortable, much less actually painful.
The point of the procedure, of course, was to introduce a radioactive isotope — Indium 111 — into my spinal fluid so that later scans can track the flow thereof. The first such scan, yesterday, was another ten-minute affair. I expect that the second, scheduled for noon today, will be no different.
I've no idea what the results might be. I just hope the doc can make sense of the scans and find out what it is he needs to know.
After the cisternogram scan at about noon, I have another completely different test procedure: the electromyogram, or nerve conduction test. Should be fun... depending on how you define "fun."
Starting tomorrow, I undergo a series of tests collectively known as a cisternogram.
It starts with a lumbar puncture, during which something slightly radioactive and extremely expensive will be introduced into my spinal fluid.
I'll then be scanned for the next few days — through Wednesday — so they can track the ebb and flow of my spinal fluid and thus, we hope, find the source of the buildup of said fluid in my brain.
I'm told that a lumbar puncture can be uncomfortable. Well, I figure it can't be any worse, in the long run, than not being able to walk... which I now can't do without crutches.
"Here she comes, to save the day...."*
Mom is coming for a visit again; she'll be here tomorrow.
As my condition continues to gradually decline while I'm getting myself ready for the surgery that will fix me, I can't help but think how fortunate I am that I have a supportive family. It would completely suck to be all on my own for all of this.
The scalding-hot water I accidentally spilled earlier today really hurts.
Or I bet it would, if I could actually feel my legs today.
We'll see about tomorrow.
For the past month — since the day before I went into the hospital in May — I've had either my sister or my mother visiting here. Nominally, they were here only to help me with the things I had to do but could not do for myself. In short, they were my chauffeurs.
Sis drove me to the neurologist the day I learned that what I'm dealing with is hydrocephalus rather than something more permanent and/or more lethal. Even though I was on my way to the hospital, we basically left the neurologist's office high-fiving; the news was far far better than anything I had expected or hoped for. I can be fixed.
There's much to be done before they can operate on me. I have to get my blood pressure under control (it is at the high end of the normal range... not quite "high blood pressure" but getting uncomfortably close.) We have to be 100% sure I'm not diabetic (we're 99% sure.) And I need to lose some weight... which I've needed to do anyway. I'm 6'8" tall... various sources disagree on the ideal weight, but my doc says I should be around 220lbs. I scoff at that. At my fittest, when I was in the Army 20 years ago, I was never less than 240lbs... and I was fit. I'll settle for 250.
250. As long as I'm fantasizing, I'd like to win the lottery, too. And have responsible politicians in D.C. And I want that pony I never had as a kid. And, dammit, where are the flying cars? We were promised flying cars by now.
So anyway... there are additional tests the medicos will have to do on me to make sure my nerves all still work. I suspect they do, but....
On good days I have some feeling in my legs now that I didn't have before, but many of the muscles in my legs and hips remain unresponsive to conscious control. Plus, the muscles I do have control of are weak weak weak, which makes standing and walking, even with a cane, difficult. I now have a pair of crutches I depend on for longer excursions afoot, meaning, any time I go out of the house.
This is not good.
The muscles are weak due to the nervous system signalling issues that have rendered other muscles totally unresponsive, but also due to lack of use. I can't exactly go out jogging to keep them in shape. My legs have always been pretty strong, but now I can see the major muscles have wasted away due to disuse — my calves are positively skinny now.
My calves and hamstrings are tightening up, too, to the point that when I am standing they want to pull my knees to a bent position; my quads (or, more accurately, the parts of my quads that actually work) when trying to hold my knees straight can't keep up with the exertion, so my maximum "standing time" with a cane is about two minutes.
I can't exercise my legs effectively, but I can do stretching. That should help the calves and hamstrings.
I am so going to need physical therapy after my brain is fixed.
My sister and Mom did much more than just chauffeur me around. My sister busted her butt and did a lot of the housekeeping I have been unable to do, which I had put
somewhere near at the bottom of my priority list.
When my sister went back home, Mom stepped in, and took care of the cooking and day to day housekeeping. I've never eaten healthier, and the house has never looked so good.
Plus, of course, Mom provided ample proof of the adage "no matter how old you are, you're still their kid." She kicked my butt to get things done around here that I'd been putting off for the past year because they were inconvenient or too hard... or because I never thought to do them.
Mom, however, has her own life to live, and yesterday left to go back to California. For the first time in a month I'm on my own.
I have my meds, and I have groceries, or can get them delivered. I have a set of chores to accomplish which, though I can't do them all at once, I can tackle a little bit at a time, even in my current condition.
I think I can manage on my own for a while. I hope.
I didn't have the opportunity to train my sister how to post here during my absence, but I hope to rectify that for future occasions. Did I miss anything while I was away?
OK, here's the deal.
The word from the neurologist, short version: idiopathic hydrocephalus.
This is far far better news than I could possibly have imagined. Not that it isn't serious — left untreated, it is. But it is also very fixable.
I was admitted to the hospital Monday, went through a couple days of testing, and am now at home. There is more testing and, ultimately, brain surgery in my future, but not immediately.
I know a lot of people have kept me in their thoughts and prayers. If you've been a loner all your adult life, as I have, it's a hard idea to get used to.
All I can say now is thanks, I'm humbled beyond words.
I heard from my neurologist's office a few minutes ago. They finally got the report of my most recent MRI from the radiologist. Unknown, as yet, is why it took almost two weeks for the report to appear.
My neurologist was actually not in his office today, but was attending at the hospital, so he hasn't actually seen the report. Hence, no diagnosis today. The report, however, is front and center on the doc's desk, so he'll see it first thing Monday.
While speaking with the doctor's assistant, I mentioned my current state and the progress, if you will, of the decline. This might not have been the prudent thing for me to do; she spoke to the doctor, and then called me back. First thing Monday, I'm to go for an office appointment, after which the neurologist will likely have me admitted to the hospital, duration unknown.
This is not what I was hoping for.
They want me in the hospital for two main reasons. First, safety. In the hospital, I'll not be as likely to fall and hurt myself. Now, I've done lots of falling, and have so far managed to avoid serious injury. So far. But a fractured wrist could happen at any time. In my current condition, as reliant on my arms as I am, this would effectively end my roaming around the house.
Second, being in the hospital will give me more immediate access to additional testing, and to a neurosurgeon. I don't yet know that I actually need either a neurosurgeon or more tests, but if I do, speed would be good.
Still, this is going to suck.
Adding to the suck: my sister and niece are coming to town tomorrow, to help out around the place for a while. "Nice to see you. Now, could you drive me to the hospital?" This was not how I was hoping to greet them.
On the other hand, since I'll be offline, perhaps I can train my sister to post updates for me while I'm away, however brief or long that might be.
Well, this is a real turn-up for the plus-fours, as they used to say.
I'm tired. Tired of waiting, that is. The news, when it comes, isn't going to be good, but that's neither here nor there. I just want to know, so we can get started on a treatment.
I had my third MRI a week ago, and it is, per the latest report from my neurologist, still in the hands of the radiologist. My neurologist hasn't even received it yet.
Henceforth, I hereby call "BS" on any TV medical show in which the heroic doctors get MRI results during the same episode in which the MRI is ordered.
Doctors watching the MRI images resolving on their screens in realtime will duly be noted with peals of laughter.
In the meantime, my condition is slowly worsening. My legs, for instance, are getting progressively weaker. I tire easily; I have to budget my trips around the house and up and down the stairs. Hauling a load of laundry up the stairs is almost more than I can manage... almost. I'll keep schlepping along.
I wonder how hard it would be to get a dumbwaiter installed? (Apparently we can still call them "dumbwaiters" instead of "verbally-challenged waitrons.") Having one would be rather handy... and would be rather cool, in a "retro" sort of way.
I can still control my feet, but that control also is declining. Safety is about to become an issue now, so today I made what I believe will be my last self-driven trip to the grocery store. Fortunately, they deliver.
Note the "Health" category under which this post is filed; my previous posts have been put there, as well. If you're new here and have no idea what I'm talking about, the posts are in reverse chronological order.
With the prospect of getting a diagnosis this week — assuming the MRI actually shows something — I've determined that there are some words I really do not want to hear from the doctor:
"Amyotrophic." That'd just plain suck.
"Inoperable." No offense, Ian.
"Hatch." I consider this to be the least likely, despite a complete lack of evidence.
At this point, though, I'd just like to hear anything concrete. Once we know what's going on, at least it will be treatable, to one degree or another. I've had it with the steroids; not knowing is making me crazy.
The saga so far:
3/17 — The State of the Russ
3/19 — MRI Complete
3/20 — No Results Yet
3/22 — Anticipation
3/24 — Still No News
3/27 — I Got Nothin'
3/30 — First MRI Results: Diagnosis Delayed
4/03 — Ouch
4/17 — Second MRI
4/21 — Second MRI Results, Sort Of
5/02 — Gratitude
5/07 — Mmmm... Brains....
I've just arrived home from what may be the last "long" drive I take for a while — I had my third MRI today.
Compared with the previous two MRIs, this one was a good deal more difficult. Despite being of significantly shorter duration — approximately half an hour in the machine, rather than the 45 or more minutes for the earlier instances — this episode was complicated due to it being my brain they were looking at.
On the MRI machine's sliding table was a cradle in which I rested the back of my head. OK, that's not so bad, I thought. Then as I lay there, they clamped down the restraint for the front of my head. I don't know how best to describe it, but have you ever seen The Man in the Iron Mask?
Now, it wasn't a full-contact restraint. Indeed, there was almost no contact... but I could feel my whiskers and the tip of my nose touching it. I'm not claustrophobic, but this was a very near-run thing. I closed my eyes, focused on my breathing and listened to the radio as well as I could over the noise of the machinery. It helped.
Halfway through, they stopped the imaging, told me to keep holding still, and slid me out of the imager. This was to be a "high contrast" MRI, so they had to inject gadolinium into my bloodstream. It only took them five tries to find a vein. Mister Pincushion, I. They then slid me back into the machine and completed the scan.
The results? I don't know yet; it will be a few days at least. We can, however, pretty much rule out a vertebral disk problem. That leaves a tumor or MS as the most likely diagnoses. I don't know which one to root for.
On the plus side, this MRI will provide proof positive, for all you doubting Thomases, that I am indeed possessed of a brain.
Here, BTW, is what I suspect the MRI will show:
The saga so far:
3/17 — The State of the Russ
3/19 — MRI Complete
3/20 — No Results Yet
3/22 — Anticipation
3/24 — Still No News
3/27 — I Got Nothin'
3/30 — First MRI Results: Diagnosis Delayed
4/03 — Ouch
4/17 — Second MRI
4/21 — Second MRI Results, Sort Of
5/02 — Gratitude
I really need to set up a separate category for this stuff.
As my physical condition has declined over the past months, most routine and mundane tasks have become increasingly difficult, or take longer to accomplish, or both. This is not altogether surprising.
One of the chores that has become most difficult for me to accomplish is wheeling the trash bin out to the curb the evening before the collectors come through. Fortunately, I don't generate enough trash to warrant taking the bin to the curb every week, but when I do have to do it, it's a challenge comparable to climbing K2 — as the photo here shows, my driveway is rather steep.
Before being afflicted with whatever it is that is crippling me, getting the trash out for collection was a one-minute job; now it takes me a full 15 minutes to get the can down and get myself back up the driveway... and I'm completely exhausted when it's done. Getting the empty receptacle back up the driveway the next day is equally challenging.
Further, maneuvering a fully-laden can down the driveway is downright hazardous for me; the only fall I've had in public was while doing so a few weeks ago. Fortunately, I "broke right" and the lawn cushioned that particular landing. The neighbors across the street were gracious enough to lend a hand.
This week, I had a full can to take down to the curb, so I picked up one last thing to take out with me (I never go anywhere around the house without thinking "what do I need to take from here to there?" so as to avoid additional trips) and headed out the front door... and saw that my bin had already been taken to the curb.
Someone had taken my trash down the driveway for me. One of my neighbors, unasked, had done for me one of the biggest favors for which I could possibly have asked. Not that I would ask.. I'm stubborn that way.
I don't know who did it — I saw and heard nothing — but I am very grateful to whoever it was.
I love living in this neighborhood. I love it that neighbors look out for one another.
I think it's time I made a neighborhood-sized batch of barbecue to share with all these fine folks. Good thing the cooking won't take a lot of walking around.
Another MRI looms on the horizon, coming up in about two weeks. It would be sooner, but the only times they had open were at hours during which I am hopelessly comatose due to my being the night-shift guy. Don't even bother trying to wake me up at 9am. Not gonna happen.
The MRI had best not be any later than it is. If it were more than two weeks from now, I would doubt my ability to drive myself to the appointment.
Despite the fact that my dosage of Prednisone has been increased — which has most definitely helped — I continue to lose strength and functionality in my legs. I'm having a harder and harder time going up and down stairs. I cannot stand up unsupported for as much as a minute. I've had to bring a stool in from the garage to use in the kitchen, because waiting two minutes on my feet for the microwave is more than I can do. Walking 12 feet across the kitchen without the use of a cane is possible only because there's sturdy cabinetry waiting to support me when I get to the other side... but even then, I usually rely on the cane.
While all this has been going on, I've been able to exercise a degree of control over my conscious movements. I can — admittedly, with difficulty — make my legs go where I want them to go when I need to, I can put one foot in front of the other as needed. I can still drive, for instance, even though getting to and into my truck is harder and harder to do.
The problem is that I'm losing control of my feet.
If I lose that, I can't drive. If I have to, I can crawl up and down the stairs here. But if I can't drive, I'm completely screwed.
OK, perhaps not completely. My grocery store, for instance, has offered online shopping for the last year or more. You go to the website, make out your list, and they roam the aisles on your behalf. All you have to do is drive down and pick up your order. It's been a big help lately, but if I can't drive...? Well, now they offer a delivery service as well. It's not cheap, but at least I won't run out of groceries.
But if I can't drive... how do I get myself to the doctor? To the pharmacy? To my MRI appointment?
I'm screwed. But I'll make do; there are always taxis, I suppose.
The saga so far:
3/17 — The State of the Russ
3/19 — MRI Complete
3/20 — No Results Yet
3/22 — Anticipation
3/24 — Still No News
3/27 — I Got Nothin'
3/30 — First MRI Results: Diagnosis Delayed
4/3 — Ouch
4/17 — Second MRI
4/21 — Second MRI Results, Sort Of
I should probably set up a separate category for this stuff.
After the delay we had getting results from my first MRI, when the phone rang this afternoon the last thing I expected was to hear my neurologist. Not one of his staff, even, but the man himself. On a Saturday. Which, have no doubt about it, got my attention.
The MRI of my cervical spine — they did not, after all, do both my head and neck this week — showed that while there is some slight bulging of some disks, there is no impact on the spinal cord; this is apparently rather normal in middle aged people. Nothing that explains my leg problem was seen.
Now they need to MRI my head.
This is not a good development. Eliminating disks as the cause of the numbness and weakness in my legs means that now we have to look at the more serious possibilities — a tumor, MS, or maybe (though still unlikely) ALS. Or maybe something completely different. I don't know all the possibilities.
It's still not certain, of course, that anything will show up in my brain, in which case there is a completely different testing regime to try to determine the problem, according to the neurologist. I can't imagine what those tests would be.
I just hope they can figure out something. I'm not in the mood and I don't have the cash to have a disease named after me.
And I do need to say again: thanks everyone for your continued support.
The saga so far:
3/17 — The State of the Russ
3/19 — MRI Complete
3/20 — No Results Yet
3/22 — Anticipation
3/24 — Still No News
3/27 — I Got Nothin'
3/30 — First MRI Results: Diagnosis Delayed
4/3 — Ouch
4/17 — Second MRI
I'll be off soon for my second MRI. Maybe this time they'll see what's wrong with me.
Having noticed a rapid and serious decline in my ability to walk since being put on the Prednisone tapering-off plan, I called the doctor last week, and was "rewarded" by having my dosage set to 60mg/day, which I began on Saturday. There seems to have been a bit of improvement — I am walking a bit better already.
I'm still waiting for a second MRI appointment.
And today I had my worst fall so far. It was not the usual "legs giving out under me" fall, though, where I crumple vertically and end up on my hands and knees. This was the full "toppling like a redwood tree" kind of fall; I went over backwards and ended up flat on my back.
I think I might have dented something. Something other than my bedroom floor, I mean. I'm pretty sure I hurt something in this fall. I'm just thankful it didn't happen while I was on the stairs.
Up to this point, I haven't really had any back pain associated with my condition; at most, there were some aches as the muscles in my back worked harder to compensate for the balance problems I've had.
Right now, though, my back feels like Barry Bonds took a swing at it — and connected, right below the shoulder blades.
Codeine, take me away....
Update: the squirrels are here... and they're pissed. Seems their deal to play Vegas fell through; the Chumash indian casino in Santa Ynez, CA is indeed a weak substitute.
On the plus side, though, they've added Hot Chocolate to their repertoire. Awesome.
I finally heard the MRI results from the doctor yesterday.
They saw nothing, nothing at all. No tumor, no lesions, no bad disk.
So now I have to undergo another MRI... this time, of my head and neck.
I'm more than a little concerned by this turn of events. If the problems I'm having were caused by a bad disk, I'd have figured it would be in the part of the spine covered by last week's MRI. I suppose a bad disk in the neck might be responsible... but I'm less optimistic about that, and am more willing to believe that the less-pleasant problems are what're happening here.
Coincident with this wonderful news, I notice that as I taper off the Prednisone as per my doctor's orders, my symptoms are returning full force. While this may be diagnostically useful, it's a major pain in the ass for me, as I have begun falling down a bit more often, and I can't stand or walk for more than a minute or two at a time. From being merely an aid to balance, my cane has gone to actually providing support. There are other problems that I'll not detail on a rated-PG website.
We're working on scheduling the second MRI, to fit around my work schedule and to allow time to rustle up the scratch to pay for the damn thing.*
In the meantime, I once again want to thank everyone for their kind words of support. I still owe several replies to those who left a word here — I apologize for my tardiness.
* As a contract employee, I am among the uninsured. No, I do not want Hillarycare.
Still no word on the MRI results. The longer I wait, the more nervous I get.
Nonetheless, I am constantly reminded that whatever my problems are, they are as a hill of beans when compared to some other peoples' problems.
Like Tony Snow, for instance.
Man, that just plain sucks. Good luck, Tony.
I thought the chances would be pretty good I'd hear from the medicos this week.
What could be taking so long? I don't know.
But it's bugging the heck out of me... and it's making me more and more pessimistic about the potential outcome. I mean, if it were only a bad disk causing these problems I'm having, it ought to be fairly easy to see on the MRI... no?
Or maybe there's nothing on the MRI and I have to have another one... of my head. That would be bad news.
Perhaps I'm dwelling on this too much, but I really don't have a choice, do I?
I just got off the phone with the neurologist's office. It is, of course, too soon for the results of the MRI to have been fully evaluated. Three to five working days, I'm told. I'll be on pins and needles.
I think that might be worse torture than the MRI.
Speaking of which, it occurred to me that if such non-torture "tortures" as waterboarding and panty-wearing are disallowed these days, setting up an MRI machine at Gitmo and running the detainees there through it under the guise of "providing medical care" might serve pretty well.
Lots of folks suggested that I take the offered tranquilizers before the MRI, but I declined — mainly because I had an hour's drive from the MRI place to home, and because I was already pretty tired; I've only had one really decent night's sleep since starting the Prednisone.
As it happened, the recommended tranquilizers weren't necessary. As tired as I was, I dozed a fair bit, regardless of the loud and annoying noise from the MRI machine, with occasional jerking-to-awareness. Only towards the end did I get uncomfortable; I found myself having to remember to breathe.
So, for me it wasn't bad, but then I'm a pretty relaxed guy... an extremely relaxed guy. But I can certainly see how 45 minutes or an hour stuffed into the machine might drive some people temporarily batty.
Many thanks to all the folks who dropped by (mainly via Mike, Misha and Joe) and left comments or sent me mail. It truly means a lot to me. I'm still working on individual replies for those that need them.
Let's just keep hoping that whatever it is I've got, that it isn't on the "bad" end of the spectrum.
Got back from the MRI place about an hour ago. It wasn't a pleasant experience, but it certainly wasn't as horrible as I'm told it could have been.
Results are pending — it might be the end of the week before I know anything.
For the past month or so I've been on the verge of giving a full update about something that's been going on here for most of the past year. I have talked about it with some people — family, my employer, a very few friends. I was going to wait until the facts were fully known, but prompted by a post at Cold Fury, I've decided now is as good a time as any to spill the beans.
Some of you may recall that last summer I broke my foot. That incident, in and of itself, was not a huge deal, nor the point of this missive, but in that post I referred to some other problems, so it's something of a chronological landmark in this story.
Ever since I injured my back in the Army in 1991, I've had recurring back-related problems. Mostly, it was sustained pain in my legs from a lower-spine disk putting pressure on the sciatic nerve. Sometimes — roughly annually — the disk would decide to get a bit friskier, and leave me flat on my back in bed for a day or two.
This past summer, however, events took a different turn. One day at the office, shortly after I broke my foot, I was making my way down the stairs when I noticed something odd: I couldn't feel my heels making contact with the stair treads. It felt like I was walking on sponges.
Soon thereafter my constant companion, the sciatic pain, went away. Just went away. Well, I thought, that's not so bad.
Gradually, though, I noticed that I was losing feeling in my legs, and not just the feeling; I was beginning to lose some of the involuntary muscle reactions that, in reaction to sensations of balance from the inner ear, help a person keep upright when standing. My sense of balance was fine; the muscles in my legs were not reacting.
As a result, I began falling down. A lot. For a period of perhaps a month, I was falling down once every couple of days. My legs simply refused to do what I wanted them to do, and down I would go. It was almost as if the muscles had been turned off, but strangely, if I consciously thought about it, I would usually be able to remain standing.
Eventually, I noticed that certain muscles in my legs had begun to go a bit flabby, while other muscles were building up. As the previously under-used muscles built up, and as I got used to not taking chances, I stopped falling quite so much.
Now, this whole time, I was convinced that it was my old back injury at the root of the problem. I figured that the disk was putting pressure on the nerves in such a way so as to interfere with control and feeling in my legs. The VA, I was sure, would be able to deal with it, but I kept putting off going to see them. Call it misguided stoicism, if you will, but really I'd just been too busy with the rest of my life, and, to be quite honest, as long as it didn't actually hurt, I figured I could deal with it a bit longer... and unlike my previous back injury incidents, this never actually hurt.
Right around Thanksgiving, though, the rate of my physical decline increased. I began to have a very difficult time standing up; if I was sitting down and didn't have a way to lever myself up with my arms, I'd be stuck — a chair without armrests was (and is) as good as a jail cell. When walking, I had to keep a hand in contact with a nearby wall or, if there was no wall near, I would walk with very deliberate baby steps. I had at that point successfully avoided falling down in public, but there were some pretty close calls.
I began working from home once or twice a week. My colleagues and managers (and even I) thought I was still having knee and back problems. Fortunately, my management is fine with telecommuting, and, not to put too fine a point on it, it was getting to be just too bloody difficult to get ready and go to the office every day.
By Christmas, the decline was severe. I could not feel anything below mid-thigh, though I still mostly had conscious control of the muscles. Some days, I couldn't feel anything below my waist. You could probably have stuck me with a knife and I wouldn't have known it. Certainly, Mycah was sticking me with her claws without me being able to tell. I was, however, putting a lot of strain on my back, and was beginning to feel it.
I stopped commuting to the office altogether. I forget which date it was, exactly, but I don't think I've been in to the office once yet this year.
So, stubborn me, I finally went to see the doc. The diagnostic process began, and as part of that I was sent to physical therapy, so that my muscular capabilities could be assessed. As the therapist targeted specific muscles, I could tell that some muscles just weren't responding at all. Remember the Thigh Master? I wouldn't be able to use it. A raw egg would be safe from cracking if held between my knees. Some other muscles were fine, strength-wise, but easily fatigued.
Yet, even as late as the end of January, I remained totally convinced that all of this was the result of my 1991 back injury.
Within a week of that last linked post, though, I had to start using a cane... not for support, as much as for an aid to balance. A "third point of contact," if you will. My late father's cane is about four inches too short for me, though, so I eventually ordered one a bit taller.
Think about that. I have purchased a cane. For my own use. Not as a gag.
I'm 44 years old.
After a couple weeks of assessment by the physical therapist, I returned to the doctor for a followup. That's when I first heard that it might not — almost certainly is not — my old Army injury coming back to haunt me.
The doctor mentioned several different possibilities, but the two words I heard loudest were neurological condition.
That means, of course, that among the possible causes of my condition are Multiple Sclerosis and (though very unlikely) Amyotrophic Lateral Sclerosis — what I grew up knowing as Lou Gehrig's Disease, but which today might be better referred to as Stephen Hawking's Disease.
I was referred to a neurologist who, as it turns out, is one of the best in the country. He performed a battery of tests on me, and backed up my doctor's preliminary assessments. It could be a neurological condition, though thankfully the odds are extremely long against ALS, though the possibility has to be considered — not to do so would be irresponsible. MS is far more likely, but the odds are higher still that this is all the result of a brain tumor, a tumor of some sort on my spinal cord, or even a damaged disk in my upper back. (Upper back? I've never hurt that before.)
Now, I'm a pretty well educated guy, so I knew right away that this could be real trouble. Deeply serious trouble. Up to this point, everything I imagined might be wrong with me was fixable. A neurological condition, though... that's different.
A tumor or a disk problem, they can fix.
MS is forever.
ALS is forever... though that "forever" is, as I understand it, usually rather severely curtailed.
But nothing is certain yet, at least, not until they see it on an MRI. My MRI appointment is scheduled for Monday.
The neurologist put me on Prednisone, which has actually been very helpful with my symptoms — my legs feel as good as they did at Thanksgiving. I can actually feel them, mostly, though the control problems remain. The medication's side effects are unpleasant (sleeplessness, dry hacking coughs, acid reflux, bloating) but tolerable... though I'm extremely tired all the time now. Fortunately, I'm already on the "tapering off" plan for the Prednisone, I have a supplementary prescription for Lasix to handle the water weight gain (about 30 pounds in three weeks — egads!), and am taking plain old Zantac for the acid.
My MRI appointment is for Monday.
What has occurred to me through all of this is that no matter what this turns out to be, I cannot let myself be brought down by it. I have no family of my own, but I have two nieces and a nephew. Though in their teens, they might still be young enough to profit from an example of fortitude in the face of actual personal adversity, as opposed to what merely passes for adversity these days.
(See also: Eiland's Theory of Compensatory Misery.)
No matter how this comes out, the least I can do is "man up" for their benefit. Even if the worst happens: no whining, no bemoaning my fate. Suck it up and deal with it, with as good an attitude as possible.
Not that I couldn't use a real-life example for my own benefit. In that respect, Fox News' Neil Cavuto would serve admirably. Thanks to Mike at Cold Fury for pointing that out; it couldn't be more timely.
[Update: Speaking of timeliness... Scientists: Manly men heal faster. Cool.]
My MRI appointment is for Monday. I don't know how long it might take to get the results.
Those of you who are so inclined, your prayers would be appreciated. Not for a miracle, mind you — though that wouldn't actually be bad — but rather, for the fortitude to bear with dignity whatever is in my future.