I recently heard an interview with actor/musician Billy Bob Thornton talking about his band and music in general and one of the things he said that struck me as odd was; “There has been no good music since 1980″.  Not more than a week later I got an e-mail from a friend (going through a serious Talking Heads phase) who lamented that all the music he heard in cafés these days sounded like wood veneer paneling and wondered if our generation (the 80s) was the last generation to do anything musically original, adding, “perhaps this is what Terence McKenna meant when he talked about the end of novelty”.

Now, I won’t argue that the seminal bands of the 60s and 70s have a place in the lexicon of rock ‘n roll, or the startling originality of the Talking Heads, or the fertile musical soil of the 80s (sorry Billy Bob), or whether Terence McKenna was… well… whatever. But I will argue that the music today is as vital, interesting and, yes, as great as anything that’s come before it.  Sure, there’s an element of the derivative, but I don’t see that as a bad thing — it just means that bands of today have so much more to play with, riff on and reimagine.

I have a theory — and it’s probably not too original — that whatever music you grew up listening to as a teenager, or while in your 20s, that’s the music that will resonate most deeply with you.  For Billy Bob it’s the Beatles, Smokey Robinson and The Stones, for my friend it’s the Talking Heads, The Replacements and The Swans and for me, well, for whatever reason, I feel connected with whatever’s happening at the moment.  Which isn’t to say I don’t feel connected with the music of my past, because I do, it’s just that my appetite for music is like a shark, if it stops moving it dies.

Anyway, it’s been a good year for music; it started with a bang and finished just as bangin’ i.e. bookended by two Animal Collective releases.  I hope some of what I’ve written or listed here inspires you to search it out, make a purchase, load it onto your iPod and move, dance or sway to the sounds of 2009.  All in all, it’s been a vintage bottling and if you’re in your teens or 20s, just think, in 2029 you too can wax nostalgic about the music of your past; “Man, they just don’t make music like the Dirty Projectors anymore.”

[Site note: As I’ve said before, numbered lists such as this are a slippery proposition.  Pretty much anything here could be moved around and it would be just as representative of what I was digging this year.  I’ve left some things off — such as EP’s (and there been some great ones: Delorean, Bon Iver, Washed Out, Animal Collective, Deerhunter, Memory Tapes, etc.) — simply because I wanted to keep this list at a manageable 50 (if you can call 50 manageable).  Bottom line; if I did this list next week it might look completely different.]

The list:

50.  Empire of the Sun: Walking on a Dream
48.  Travis Callison: Free
49.  Wild Beasts: Two Dancers
47.  Bear in Heaven: Beast Rest Fourth Mouth
46.  Real Estate: Real Estate
45.  Hush Arbors: Yankee Reality
49.  the dodos: Time to Die
44.  Cass McCombs: Catacombs
43.  Megafaun: Gather, Form & Fly
42.  Telefon Tel Aviv: Immolate Yourself
41.  Junior Boys: Begone Dull Care
40.  K’ naan: Troubadour
39.  Yeah Yeah Yeahs: Its Blitz
38.  Neko Case: Middle Cyclone
37.  The Very Best: Warm Heart of Africa
36.  The Mountain Goats: The Life of the World to Come
35.  Field: Yesterday and Today
34.  Fever Ray: Fever Ray
33.  Bibio: Ambivalence Avenue
32.  Nosaj Thing: Drift
31.  Xx: xx
30.  Various artists: Dark Was the Night
29.  Röyksopp: Junior
28.  Atlas Sound: Logos
27.  Yo La Tengo: Popular Songs
26.  JJ: JJ N° 2

25. Various Artists: 5: Five Years of Hyperdub

Yeah, it’s kind of a copout to put a 32 song compilation on a list such as this, but this is number 25 and it’s just a damn fine record.  Arguably the most important dubstep label, Hyperdub, has amassed an impressive catalog of heavy, bottom-ended music.  And that’s the thing — catalog. Most of this has been released as singles, so unless you’re a DJ, or a collector of this stuff, you probably haven’t taken the time to pick any of it up. Split into two discs — past and present — it’s a good glimpse into where the label has been and where it’s going.  Can you dance to it?  Good question.

24. Clientele: Bonfires on the Heath

I wouldn’t say Bonfires on the Heath is treading any new ground for Clientele, but that’s not necessarily a bad thing.  Sticking with the 60s style jangle pop, sorrowful lyrics and hummable melodies that swim inside your head for days, this is an another assured release.  Sublime and haunting in a way few albums are, #24 on this list seems ridiculously low (case in point why numbered lists are frustrating).  But here’s the thing; 10 years from now when I revisit the best music from the first 20 years of the 2000s, Bonfires on the Heath will probably be in the top 10. Or any Clientele record, for that matter.

23. Wilco: Wilco (The Album)

Stylistically, Wilco (The Band) has always been a bit slippery to pin down, but with Wilco (The Album) and Sky Blue Sky before it, a definite sound, from this incarnation of the group, is starting to emerge.  Feeling like a 1970s post-Nixon era drive down the PCH (or what I imagine that would be like), most everything on this LP would fit nicely onto 1970s AOR FM radio.  That said, there’s nothing nostalgic about the songwriting (see “Bull Black Nova”). Instead, Wilco (The Album) finds a band at the top of its game, digesting its influences and, again, defying expectations. Because, really, how else can you explain the audacity of a rock song with the lyrics “everlasting love” that wasn’t penned by Bryan Adams or Celine Dion for the closing credits of a romantic Hollywood blockbuster that’s absolutely free of irony?  You can’t.  And that’s what makes Wilco (the band) such a rewarding experience.

22. Dirty Projectors: Bitte Orca

To say that everything that’s going on here is a bit dizzying, is to undersell what the Dirty Projectors are all about.  In fact, the band throws more at a single song than most artists do over a career; orch pop, R&B, electronica, chamber choir, you name it.  Is it a mess?  Well, that depends on how you like your pop… err… art pop.  If you’re looking to hook onto a melody or rhythm for an entire song, I suggest you look elsewhere.  But if you’re willing to let go — let the ideas (yes, ideas, it often feels a bit brainy) lead you through these, arguably, delicious nine gems, then you’re in for quite a treat.  Download “Useful Chamber” and if you like what you hear, the rest of the album will surely work for you.

21. Girls: Album

Hype is a funny thing. So is the knee-jerk reaction to it.  And while I’d like to say I’m immune to both, the truth is — where the indie music blogosphere is concerned — not so much.  Don’t get me wrong, I’m not going to jump on or off a bandwagon because some Brooklyn music journalist tweeted I should, but until the record companies start sending me review copies of albums, before I plop down my nine bucks on this year’s Vampire Weekend, I’m going to follow a few social networking threads.  Which brings me to San Francisco’s own Girls, this years uber indie “love ‘em or despise ‘em” sensation. Toss off, the band’s colorful story, stick with the requisite lo-fi aesthetic, garagey Beach Boys melodies and dizzying songcraft and, well, you have yourself a hype/backlash defying, wonder of an album.

20. Andrew Bird: Noble Beast/Useless Creatures

This album was released in two forms; Noble Beast and Noble Beast/Useless Creatures.  And while I love the standard version Noble Beast (and perhaps it would have been on this list regardless), the two disc version, with the instrumental Useless Creatures, is revelatory, capturing everything Andrew Bird is about.  Of course, Noble Beast is still filled with Bird’s quixotic love of words for words sake lyrics, but on Noble Beast they seem to be accompanied by a surer sense of melody, making the odd word combinations resonate in ways they haven’t before.  For instance, every time I hear the lines from the song “Masterswarm”; “So they took me to the hospital, they put my body through a scan/what they saw there would impress them all for inside me grows out of man”, riding on the back of its rising melody, I want to melt.  I can’t tell you why exactly, but I understand what he means.

19. Serge Gainsbourg: Histoire De Melody Nelson

First, let me throw out a couple of caveats in regards to this one: 1).  I don’t speak French.  And 2).  This was originally released in 1968.  In regards to the first, this hardly matters when it comes to Gainsbourg — especially this record. All you need to know (and believe me there won’t be any confusion about it) is that machismo and sexuality are what he’s going for (surprise surprise).  As to the second, well, until this year, the album has essentially been out of print and unavailable to all but the most committed of crate divers.  So then caveats aside, what do we have?  A funky, dripping, sexy album that’s as hip now as it was no doubt then.

18. Mos Def: The Ecstatic

As much as I love Mos Def the renaissance man, his music so far this decade has been inconsistent at best.  Which is all the more reason why The Ecstatic leaves me… well… ecstatic — it bumps.  Funky, loose, poignant (and perhaps a little lazy at times), Mos has something to say that’s worth listening to, and thankfully he has the beats and production to deliver it over.  Working with the likes of J Dilla, Madlib, Mr. Flash, Oh No, Slick Rick, ex-Black Star partner Talib Kwelli and others, seems to make for an inspired work environment.

17. Passion Pit: Manners

How to make a pop album that’s both loved and loathed: Ingredients; 1/8 part Syrupy sweet/anthemic synths, 1/8 part contemporary indie falsetto: 1/8 part slightly vague yet.  romantic lyrics (of the happy sad variety), 1/8 part select choruses accompanied by children’s voices, 1/2 part uncanny sense of melody and songcraft.  Stir, package and release.  Serves untold amounts of summer indie music festivals.  Delicious.

16. Beirut: March of the Zapotec & Realpeople: Holland

I don’t know, maybe I just have a soft spot for Balkan infused song stylings filtered through Mexican brass bands, but damn, if this isn’t another inspired delivery by Zach Condon’s Beirut.  But that’s only the half of it — literally — as Beirut technically makes up only half of this record, the other half goes to Condon’s electro-indie endeavor, Realpeople.  Two EPs, with two different aesthetics, merged into one record, this really shouldn’t have worked as well as it does.  But with Condon’s mournful voice as the through line and the brilliant bridging “My Night with the Prostitute from Marseille”, it’s a very satisfying journey that works in spades.

15. The Decemberists: The Hazards of Love

If there are two things as a music fan I’ve had trouble wrapping my head around over the years it would be prog rock and Jethro Tull… no, wait, there’s a third, rock operas.  Now if you told me in 2009 that one of my favorite records would have elements of all three (some more than others), I would’ve dismissed your suggestion outright.  But if you then told me it would be a Decemberists’ album, well, the conversation would’ve lasted a little bit longer.  Even still, the fact that the record is as good as it is, is a bit of a surprise;  heavy, crunching guitars, ridiculously rocked out vocals from guest singer My Brightest Diamond’s Shara Worden and repeating motifs… it’s a hell of a ride that gets better upon repeated visits.  And, yes, there’s some sort of story.

14. Loney, Dear: Dear John

Of course, it doesn’t hurt that the album has two of my favorite songs of the year, “Airport Surroundings” and “I Was Only Going Out”, and while it isn’t Loney, Dear’s best (that would be Loney Noir), it is an affecting collection of songs dedicated to sorrow.  Oh, and just in case the title Dear John, didn’t give it away, multi-instrumentalist Emil Svanänen (Loney, Dear) is looking to work some things out… which is fine, because Dear John is well worth the time.  A folk-techno hybrid of sorts, this is a slightly new direction for the band.

13. Helado Negro: Awe Owe

This is another one of those albums that if you try to pull it apart and latch on to individual songs, you’ll probably be disappointed. On the other hand, if you let the beachy, fuzzy,  glitchy electronic tropicalia of Roberto Carlos Lange’s debut wash over you, then trust me, you’re in for a treat.  In heavy rotation late this summer, I’ve got some advice for you; if you’re stuck somewhere cold — oh, I don’t know, north east of the Mississippi, bracing for another dump of snow and you like your latin music with a dash of experimentation — look no further than Awe Owes, click download and start thinking about swimsuits and mojitos.

12. Grizzly Bear: Veckatimest

All right, you get it, I’ve got a particular soft spot for meandering, midtempo, throw every instrument you can think of into the protection mix orch pop.  And while you may want to keep that in mind in regards to my opinion about Veckatimest, it doesn’t change the fact that this is a brilliant, lovely record. Opening with the sprawling America-esqe “Southern Point” and then moving on to, arguably one of the best singles of the year, “Two Weeks”, you know what you’re going to get within first eight minutes — an album of meticulously produced, well thought out pop songs.

11. The Antlers: Hospice

The post-rock/indie rock aural tradition is loaded with sad sacks and melancholia to the point of almost ridiculous cliché.  And while I’ve got no problem getting down into the mud with the best of ‘em and vicariously rolling around in artistic pain, it’s not exactly what I’m looking for in my music these days.  Which is why my love (and inclusion on this list) of The Antlers Hospice is such a surprise. Sure, I’m a sentimentalist, and the brazen honesty and sadness on this record are indeed seductive, but tackling a concept album (a relationship with a terminally ill child) — regardless of how sincere it wants to be — is a harrowing endeavor, and one wrought with potential failure.  Hospice succeeds in spite of the odds and is an unqualified and paradoxically big and small sonic wonder.

10. Fanfarlo: Reservoir

Another Swede responsible for great indie rock?  Well, yeah.  Throwing everything into the mix — pianos, mandolins, violins, trumpets, toys and traditional bass, drums and guitars — lead Fanfarlo songwriter Simon Balthazar has created one of the best orch pop records you probably haven’t heard.  Why some records take off and others don’t, it’s hard to say, but with production by Peter Katis (The National, Interpol), you’d have thought this would have.

9. YACHT: See Mystery Lights

If there was ever an album where one song sold the whole thing for me, “The Afterlife”, the second track on this synthy retro fest, is that song.  Easily taken as ironic, See Mystery Lights, is anything but — optimistic, spiritual, bouncy and, yes, a little derivative (hey, what’s wrong with a little homage to the Tom Tom Club and Kraftwerk?), if I’m gonna reach for a quick pop fix to remind me of what’s really going on, I could do a whole lot worse than to cue this record up.

8. Bill Callahan: Sometimes I Wish I Were an Eagle

Sublime.  Contemplative.  Beautiful.  Purposeful.  Dark.  All these are apt descriptions for ex-Smog singer Bill Callahan’s new solo effort.  Orchestrated in a way his previous band never was — or attempted to be — the storytelling and arrangements of these songs suit Callahan’s deep melancholic voice perfectly.  Like last year’s For Emma, Forever Ago by Bon Iver, this is a haunting, personal record that lingers long after it’s finished playing.

7. Le Loup: Family

Falling somewhere between tribal rock, freak folk, a bite off the Animal Collective and Fleet Foxes mushroom, and a celebration with friends and family around a bonfire on the beach, Family works, not only because it’s able to hold all these things together, but because it just should.  By that I mean, I can think of no other record this year I wanted to work more than this one.  Call me a sucker for reverb soaked songcraft, but this one had me at the first cavernous note.

6. Neon Indian: Psychic Chasms

When I was a kid I used to have this portable, yellow Panasonic AM radio shaped like a warped donut that could be twisted apart into an S- shape and that I would carry with me everywhere.  It was a beach radio more than anything else, the only one I had, and pretty hip looking.  But the thing I remember most about this radio was the sound; whether it was the salt air’s effect on the transistors or all the sand clogging the speaker holes, it had a sort of warbly fidelity that gave the music a psychedelic glow.  Psychic Chasms reminds me of that radio; warbly AM radio disco tunes that feel sunburnt and phased, but oh so cool.

5. Jack Peñate: Everything Is New

Pop music — despite the general misconception of what most people believe it is — is deep and complicated stuff.  Argue all you want about the complexities post-bop jazz, the musicianship of prog rockers, and the what have you of what have you, but a good pop song — in my estimation — is shoulders above it all.  Now don’t get me wrong, some pop has the lasting power of a snowflake on a dog’s warm nose, but even when it does, for that brief moment — when it’s makes that quixotic imprint on your brain and you’re humming something you didn’t even think you liked (*cough-Black Eyed Peas-cough*) — it’s nothing short of miraculous.  Everything Is New as an album title might be Peñate’s cheeky way of saying, “look, I understand what I’m doing isn’t exactly original (think Robert Smith and Edwyn Collins), but I really believe in it and these are great songs.”  Or maybe not.  Whatever.  Either way, this is brilliant pop album.

4. Amadou and Miriam: Welcome to Mali

The back story behind this husband and wife duo from Mali is the stuff of Hollywood rock biopics and the music on Welcome to Mali makes them deserving of one.  In many ways, this record begins and ends with Amadou’s virtuoso guitar playing, combining traditional Malian blues and other African elements with Western rock, but if there’s a sweeter, more achingly sincere voice than Miriam’s on any other record this year, I’d like to hear it.  And that’s ultimately what what one takes away from this breathtaking album.

3. Sin Fang Bous: Clangour

Stepping out from his usual gig, Seabear, Icelandic musician Sindri Mar Sigfusson has created a modern folk classic — a twee, glitchy, multi-instrumental (synths, banjo, guitar, etc.) songwriting tour de force with a whole mess of catchy melodies to wrap your head around.  Equally able to be dissected and listened to song for song or taken as a sonic whole with an odd psychedelic rhythm and logic, it’s a fairly obscure gem that deserves more buzz.  Not sure what it is about the far north — the cold, the long days and nights, what have you — but they certainly export some lovely music.

2. Phoenix: Wolfgang Amadeus Phoenix

Another band on this list that has taken what they’ve done so well in the past and perfected it 2009.  Pure power pop electro fun, Wolfgang Amadeus Phoenix, represents the best in sugary songcraft.  Deceptively simple and catchy, it might be easy to dismiss this record as lightweight.  But don’t let your desire to dance or the seductive hook-into-your-brain melodies fool you, there’s a whole mess of romantic angst going on here as well… I mean, c’mon, they’re French.

1. Animal Collective: Merriweather Post Pavilion

A friend of mine said upon hearing this record, “this is the first Beach Boys’ album I’ve ever liked”. And I understand where he’s coming from. It’s impossible to listen to Merriweather Post Pavilion and not hear the best ideas and elements of that seminal group. But it also must be said, this sounds nothing like a Beach Boys’ record. Animal Collective have indeed decided to explore a more pop aesthetic on Merriweather, focusing on Panda Bear’s melodic vocal harmonies and sensibilities, while foregoing instinctual forays into discordance and horror, but while the sampling and electronic beats do sound “familiar” and contemporary, the term “pop”, as it applies to Animal Collective, is a relative one. Densely layered and transcendent, this is nothing short of a masterwork.

Hau’oli Makahiki Hou!

pau

The beautiful thing about writing a personal blog — you know, aside from the obvious personal stuff — is the opportunity to share something useful that might pop up in a Google search (or Bing if you prefer one giant conglomerate over another).  And while that’s certainly true of this posting, it took a little time to figure out how I was going to go about it, i.e. how personal did I want to be?

In the end, however, it was kind of a no-brainer. After many less than stellar searches of my own, it was obvious if I wanted to say something useful about syringomyelia (outside of the clinical definition), then I would need to be specific to my own personal experience as a quadriplegic. Because, ultimately, that’s what would have been most useful for me.  So personal I will be.

The salad days

Up until about four years ago — aside from the whole chronic pressure sore thing (another story for another time, though there’s plenty alluded to it on this site — directly or indirectly) — things healthwise have been pretty stellar. I have a kick-ass immune system and for a C 4-5 quadriplegic — almost 30 years postinjury — I’m in excellent shape. Simply put, I take care of myself.

Still, somewhere around 2005 I started to notice some changes happening in my body, namely sensation loss below my level of injury (in my groin, er, *cough - penis - cough*).  And while the loss was spotty at first — sometimes there, sometimes not — as time wore on it grew more and more consistent, sometimes lasting for months.  Alarmed by the progression, I scheduled an appointment with my doctor and began the process of trying to figure out what was happening to me.

The first thing that was done was to get an MRI, but because my sensation loss seemed so specifically located in my pelvic region, instead of ordering a complete scan of my spine, only one of my lower back and sacrum were taken.  A decision which, as it turns out, was grossly incomplete.  Had I seen a neurologist familiar with spinal cord injuries from the beginning, instead of my physiologist, most likely a complete set of scans would have been ordered and my situation now would be markedly different.  However, that never happened, and regardless, the radiologist at the time did see something he didn’t like, but when a request was made for further, more complete scans, my insurance provider denied it out right as “redundant”.  I was then counseled by my doctor to “keep an eye on things”, and if they seemed as though they were getting worse we could give it another go then.

Fast-forward three years, and while the sensation loss didn’t appear to be spreading to other parts of my body (as far as I could tell, anyway, with my limited sensation), I was beginning to have severe neck pain, the kind of which I hadn’t known since the time of my injury.  Wrongly or rightly — and perhaps some might say consistent with my character — I endured it for almost a year more before finally admitting I needed to see a neurologist or some sort of spine specialist about it.

Around February of 2009, after meeting with spine surgeon Bobby Tay at UCSF, a new set of MRIs revealed, not only a major chaiphosis in my neck, but a condition known as syringomyelia and a massive syrinx that ran from my level of injury at C 4-5 all the way down to the base of my spine, with a syrinx to spinal cord ratio of about 95%.  It was suggested that, given its size, it had been expanding for many years (perhaps as long as 10) and was most likely the cause of both my pelvic sensation loss and my pain.

Admittedly, looking at my MRIs that afternoon, I was both relieved and nervous.  Relieved, because at last I had a diagnosis and an explanation of what was happening to me, and nervous because, well… of two things, really; one, I’m intimately familiar with what happens to a spinal cord when it’s stretched or compressed for an extended period of time — neurons die.  And two, I was told the usual solution to this problem was surgery.

Ouch. 

And while I’m not somebody who dwells on past decisions or has regrets about things I’ve done, I do like to subscribe to the philosophy; do things for the you of today that the you of tomorrow will be thankful for. Because, c’mon, really, the last thing I want the me of tomorrow saying about the me of today is, “Gee, what a f—-n’ dumb ass”.  So, yeah, it was a little difficult not to question what the hell I was thinking for so many years.

But I digress.

So, with my head spinning, I left that initial appointment with these three things:

1. a follow-up appointment with a neurosurgeon.
2. an understanding that my syrinx was probably expanding and therefore causing more damage.
3. a desire to Google syringomyelia.

Be careful what you Google for

One of the first things I discovered about syringomyelia was that it kind of exists in that gray area of medical conditions, where it affects just enough people to draw the attention of the neuroscience community and generate a few websites, but not enough to be considered “sexy” and garner mainstream attention, celebrity spokespersons and research dollars.  All of which could go a long way in advancing the further understanding of the condition and stimulate cutting edge (no pun intended) surgical techniques for treatment.

But as I’ve said on several occasions, and I think it bears repeating here, googling medical conditions is a sketchy prospect.  On the one hand you might find what you’re looking for, but on the other, you might also find what you’re looking for.  The point being, any condition you research is going to have a list of symptoms or facts ranging from the rather benign to the downright scary, and for whatever reason our attention always seems to fall on the scary.  And mine was no exception.  But since I was already dealing with symptoms that were categorically sketchy, the things I found out about syringomyelia — including the above — were less of a shock and more informative, giving me a much more pragmatic viewpoint than I had just hours before when I was looking at my MRIs in the doctors office.

Questions to answers to questions

No doubt, having an exhaustive breakdown of syringomyelia was immensely valuable, but in the end, this information felt somewhat broad.  One of the great things about the websites I visited, however, was that most had forums, and for me this is where my diagnosis got personal and began to take shape.  But unlike most forums out there (cooking, tech, what-have-you), medical forums — 99% of the time — will never be able to give you the exact answer you’re looking for.  And how could they?  Any medical condition one might have is going to come with an infinite array of unique factors that may or may not pertain directly to a clinical diagnosis.  In other words, your mileage may vary. Which is fine, if you understand this going in, otherwise, you may come away with a skewed understanding of your particular situation and a very depressing outlook on your future.  Because, medical forums are about people with problems looking for answers, they’re generally not — in my experience anyway — happy-feely places loaded with success stories.  Which isn’t a bad thing –  there are valuable nuggets of wisdom to be found from other peoples difficult experiences and/or questions, you just need to know how to apply them.

Opinions are like…

True (if you carry that expression out to its natural conclusion). But if I took anything away from my research, it was this; find a neurosurgeon experienced with syringomyelia and get several opinions.  Obvious advice, to be sure, but it’s easier said than done.  As I said above, syringomyelia is not the most common of neurological disorders, and even if it were, it’s not like I attend cocktail parties with neurosurgeons.  No, aside from Dean Chou recommended by UCSF, I had to bite the bullet, tell family and friends of my condition, and ask if they could pass on my situation to their friends and family to see if anyone knew of any good neurosurgeons.   Within two weeks — surprisingly or not so surprisingly — I had six, very well-qualified neurosurgeons to choose from.  From these, I chose to schedule appointments with three; Bruce McCormack at the Neurospine Institute Medical Group, Larry Shuer at Stanford and Langston Holly/Ulrich Batzdorf at UCLA.

From my research, among the more important things I learned before going into these appointments, was that the standard way of dealing with syringomyelia was to insert a shunt into the spinal cord to drain the cerebral spinal fluid (CSF) from the syrinx.  I pretty much knew that, unilaterally, this would be the recommended course of treatment, no matter how much I wanted to hear of some other new technique that would avoid placing this kind of hardware in my spine.  Even still, I had questions; where would the shunt be placed, how long would the surgery be and what would it entail, who would be assisting with the surgery, i.e. a physician’s assistant or another neurosurgeon, how long would I be in the hospital, how long would my recovery be once I was released, and — you know, because one has to have priorities — would I be able to ski again?

But also — and almost equally important — I wanted to get a sense of who would be working with me, i.e. did we gel and what did my intuition tell me about them — understanding full well neurosurgeons aren’t typically the most effervescent crayons in the box. In the end, however, if you’re going to be cutting into my spinal cord, I’d more than likely go with skill over a sparkly countenance, but I’m also wise enough to know you can have both… or you should at least look for it.

Of the four doctors I met with, their experience, opinion on treatment and personalities varied enough to differentiate them from one another.  The first doctor I met with, Dean Chou, suggested two shunts; one directly below my level of injury, and a second lower down, in case the syrinx was segmented.  The shunts would run from my spinal cord and drain into the cavity around my lungs, requiring another incision and procedure from the front.  Bruce McCormack recommended essentially the same thing, however, felt that two shunts were unnecessary due to the fact that syrinxes are rarely segmented.  He also felt that the shunt should drain into the abdomen region rather than around the lungs, a more typical location.  Both Larry Shuer and Langston Holly also recommended single shunts, but unlike the first two doctors both wanted me to have a CT myelogram before they could say anything specific about where the shunt would be placed.  The difference between Shuer and Holly, was that Larry Shuer also suggested that, given the extreme size of my syrinx, an alternative, more experimental procedure, which didn’t involve shunting, might be a possibility — a terminal ventriculostomy.  A suggestion that admittedly piqued my interest.

Personality wise, I felt comfortable with all four of these doctors — somewhat surprising given the aforementioned rep neurosurgeons have. But in the end I narrowed it down to Larry Shuer and Langston Holly, if for no other reason than they both requested more nuanced scans.

[Side note: I met with both Dean Chou and Bruce McCormack at the beginning of 2009 and Larry Shuer and Langston Holly at the end of spring.  At each of the initial two appointments, I asked them if surgery needed to be done immediately — my ski season was just getting under way and I wanted to know if either felt it would be unwise to put things off until it was over.  Both doctors felt the best course of action would be to have surgery as soon as possible, but that given the look of my scans, waiting a few months would probably be fine.  Each issued a caveat, however, saying that while my symptoms didn’t appear to be rapidly changing, a jarring accident could change that — there was really no way of knowing.  So in the end, it came down to risk versus reward; and since I had no idea what would happen during or after any surgery, but I knew I had the ability to ski at that time, the coarse I chose was to ski my brains out that winter/spring and let the consequences be damned. Carpe diem]

To shunt or not to shunt

Truth be told, I was having a difficult time wrapping my head around the whole shunting part of the surgery.  I understood surgery was necessary — that was a no-brainer — if I didn’t do anything things would continue to get worse, and if I had surgery, well, at least I had a chance things would improve.  But shunts — aside from the risk of infection or the fact that they usually need to be replaced at some point due to dislodgment or clogging — seemed so… oh, I don’t know… clumsy.  Which only hammered home how little was known about syringomyelia and the lack of cutting edge surgical techniques in its treatment.  Aside from that, and probably more importantly, I didn’t really see myself as the kind of guy who had hardware inside him — I see myself as a strong, healthy individual and not one who needs artificial parts to function properly.

So what to do? 

No doubt, the option to go with the terminal ventriculostomy, and avoid a shunt altogether, was appealing if for no other reason than that.  But, the caveat with that technique — aside from the surgeon who suggested it had never performed one before (which truthfully wasn’t an issue, given that either way my spinal cord would be cut into) — was the simple fact that it wasn’t done very often. And when it was, the little information I could find, seemed to suggest it was only marginally successful.  Still, the pull in that direction was strong — I really didn’t want a shunt. And besides, it could be argued, given my unique situation, I was the ideal candidate.  But if I was going to roll the dice, and be somewhat of a guinea pig, I wanted to feel confident my reasoning was sound.  Meaning; was I avoiding the shunt because I didn’t see myself as a shunt kind of guy? Or, given my extreme situation, was a terminal ventriculostomy a truly valid option?

Well, after much research, soul-searching, and the advice of a cousin of mine who’s a spine surgeon — I decided to take the more conventional route and go with the shunt.  It wasn’t an easy decision, by any means, but given the risks versus rewards — namely if it didn’t work I’d have to get right back under the knife again — it seemed like the prudent thing to do.  Of course, there was really no way of knowing what would be best, but it was a decision where — regardless of the outcome — I could live with my reasoning.

Yeah, but what about…

When ski season came to a close at the end of April, it was alarmingly clear I needed to get on with scheduling surgery. I had taken several hard spills over the course of the winter and spring, and whether or not it had anything to with my escalating symptoms of more sensation loss and weakness in my left arm (some would suggest it did), things were definitely getting worse and needed to be arrested.

However, here’s the thing; while I was mostly comfortable with my decision about the surgery — even though I had yet to choose a surgeon — what I wasn’t sure about was my postsurgical recovery.  Definitely a concern, if for no other reason than it would help me mentally prepare for what lay ahead.  The doctors said it would be about a month, but their experience was primarily with able-bodied persons — or at the very least, paraplegics — and their abilities and needs were far different from my own.  As a fairly high-level quadriplegic, just getting in and out of bed could be problematic; I have to be lifted, which, under the best of circumstances, stretches my spine — a potential issue after major spinal surgery.  Also, in order to do pressure relief while in my chair, I need to do a bit of a yoga move, where I lean over onto my knees, arms dangling at my side, with my head almost touching my toes to get the full pressure off of my butt — a  serious stretch, which, again, seemed like a potential issue after spinal surgery.

So back to the forums I went, trying to get some sort of sense of what I could expect.  And while I couldn’t find a single quad who’d gone through this type of surgery for me to bounce my questions off of (though they’ve got to be out there), I was able to get in touch with some paras, and what they said differed greatly from the prognosis my doctors gave me.  Eye-opening, to say the least; recovery — based on their anecdotes — was a rather protracted and difficult affair.  And while it wasn’t easy to hear, it was important to wrap my head around, because in the end it would serve to prepare me for either outcome — short and simple or long and challenging.

But obviously it wasn’t the short and simple that concerned me, it was the long and challenging.  And not for the reasons one might think. I’m perfectly fine with physical challenges.  Difficult or otherwise, it’s the story of my life.  But if I’m going to couple a risky surgery, that carries with it a possibility of inflicting more harm than good, with that of a protracted recovery, well, then I better be ready to commit to a new direction in my life.  Which I was (am).  But I’m also all about committing to the present moment. And at that time — despite the growing sensation loss and weakness in my left arm — I felt I was at a crossroads.  In other words, if there was something I wanted to do, I should seize the day and do it, as there were no guarantees after the surgery.

And so for about three days there, I seriously thought about packing up and going to South America or Spain.  I’d never been out of the country before (aside from surf trips into neighboring Baja) and I was perfectly willing to accept any collateral damage that came with putting off surgery in exchange for traveling with the strength and physical mobility I still had.  Don’t get me wrong, I didn’t want to lose any more function — I’m a high enough quad as it is — but like I said, the surgery was risky and came with no guarantees.

In the end, however, I decided to go with getting the surgery and put off my traveling until next year. I felt I had enough information about the recovery and faith in my own stellar health to roll the dice and attempt to arrest the problem where it was.  Sure, others had a tough go of it and, yeah, I was a quadriplegic, but damn if I wasn’t going to be some sort of postsurgical, medical journal worthy, recovery phenomenon.

The first slice

On September 21st, almost 6 months after my diagnosis, I had my surgery at UCLA with neurosurgeons Langston Holly and Ulrich Batzdorf.  Of course, I was out cold for the entire six hours of the procedure, but roughly here’s what went down (or so I’ve been told): In order to facilitate the draining of the syrinx, the surgeons cut into my back between my shoulders, cut through the dura surrounding my spine, removed some bone at T 5-6 to access my spinal cord (a location chosen for its proximity to my level of injury, but far enough away so if the spinal cord was damaged during surgery I wouldn’t lose any mobility function), inserted a 6 inch shunt into my spinal cord, which would drain the CSF into my dura and be reabsorbed back into my body, closed me up and then stapled the whole thing shut with 23 staples. Simple.

All told, I was in the hospital four days, released and spent two more weeks in Palm Desert recovering at my folk’s house before heading back to Berkeley to resume some semblance of my previous life.  As far as the recovery went, I was spot on — there were no medical hiccups and I healed quickly.  Of course, I’ve never had surgery before, so I don’t have anything to compare it to, but I’m going to go out on a limb and say, yeah, I’m some sort of postsurgical, medical journal worthy, recovery phenomenon.

The hospital stay itself, was a bit of a blur — drugs and anesthesia have a way of doing that, I suppose — but that’s probably not a bad thing considering the circumstances. Palm Desert, on the other hand, was an unexpected and memorable gift. I anticipated the benefits of being around family, but I didn’t really consider what that would mean outside of the obvious loving vibes, great food, etc..  The relaxed nature of the desert, the hot weather, not having to worry about making meals (I ate enough seafood to be rung out and used as a mercury source for a large thermometer company), allowed me to work on my only two self assigned jobs of healing and completing the first season of Dexter.

During those two weeks, I was able to get into my chair at least two or three times a day for about an hour at a time, and that was more than sufficient — any longer and my dysreflexia would kick in.  As I said above, I don’t have much experience in these matters, but I’d say if you’ve got a surgery to recover from, you might want to call the Schmiesing’s in Palm Desert.  Because truthfully, I’d say my speedy recovery owes as much to my folks’ unconditional hospitality as it does to the incredible healing abilities of my body.

Home again, home again

On October 6th, two weeks after my surgery, my staples were removed and I was given the green light by my neurosurgeons to head back to Berkeley.  At the appointment, they asked me if I noticed any changes for the better or worse, and I found the question difficult to answer.  All things considered, I felt pretty good, but until I was able to return to my normal life’s activities, I had no frame of reference.  I hadn’t exercised in two weeks, my muscles had atrophied and I was still feeling somewhat dysreflexic.  I didn’t feel any damage had been caused by the surgery, but again, it was difficult to say until things re-equalized — my sensation in general is difficult to pin down and really a matter of nuanced degrees.

My instructions for Berkeley were simple: no skiing (drag city), no pushing for at least two weeks, and then to take it slowly after that, seeing how I felt on a day-to-day basis.  Two weeks on the nose, I was back on the track, trying to pick up where I left off, but it felt as though I hadn’t worked out for about a year.  I was weak — my left arm especially, locking up every third rotation — and the time it usually took me to do a mile and a half, I could only do a mile.  My incision healed magnificently, but the affected areas from the syrinx, not so much, and it became patently obvious this portion of my recovery might take longer than I hoped.

But how much?

That was then, this is now (December 11, second follow-up appointment et al.)

“So when you say subtle changes for the better, what exactly do you mean?”  I asked my doctor.  “Subtle seems kind of vague… like the word may.  Like in a news story; “the bag may have contained heroin.”  Which is true.  But it may have also contained donuts.  So is subtle something I could see?”

The doctor smiled slightly, getting my meaning. “Yes.  There’s a subtle change in the size of the syrinx at the base of your spine and up towards the level of your injury.  It shows up as more definition on the MRI.”

“Cool.  A little better is better than a little worse.  But is it going to drain more?”

“It should. Typically, in cases such as yours, and for reasons we don’t quite understand, the drainage at this early stage is slight, but in the coming months we should see a more substantial decrease in the syrinx’s size.”

“But what about my arm?  It definitely feels weaker than before the surgery.  Especially when I’m on the track pushing, it’s almost like it becomes paralyzed or something.”  I demonstrated my pushing motion.  “Every fourth push or so, I have to stop, wait a second, let it recharge, and then go again.  It’s very frustrating.”

“Well, there’s nothing on the MRI to suggest it’s neurologically related to the syrinx, so perhaps it’s a fatigue issue with your deltoids.  Try drinking some Gatorade a half-hour before you work out and see if that helps.”

“Gatorade?”  I laughed, almost in disbelief.  “You think it’s an electrolyte thing?”

“Perhaps, but it’s all I can suggest at the moment.  Give it a try”.

Okay, so I was expecting something a little more neurological from my neurosurgeon, but okay, Gatorade, I can go with that.  It’s a bit low-fi, but it’s simple enough to put into action.

“So, can I ski this winter?”

Say yes.  Say yes.  Say yes.

“I don’t think that would be a good idea, no.  It’s still too early.”

“What about spring?”.

“Maybe.  Let’s see how the MRIs look in March and we’ll discuss it then.”

I digested that for a second then asked, “And why can’t I ski exactly?”

The entire room burst into laughter; my dad, my good friend and, yes, my neurosurgeon… everyone but I. Clearly my extraordinary healing abilities weren’t appreciated.

“Because you just had major spinal surgery.”  My doctor said, still laughing.  “We usually like people to wait at least a year before doing anything extreme.”

“Yeah, yeah, I know that.  But I mean, what are we afraid is going to happen?”

“The shunt hasn’t had enough time to secure itself and could come loose”.

“Fair enough.”  I said, understanding March still gave me a couple of months to ski out the season.

He paused for a moment, looking me in the eyes, to confirm I understood the gravity of my situation, then asked, “So when in March would you like to schedule your MRI and follow up?”

“The first week.”  I said without hesitation.  “Definitely the first week”.

And there you have it, three months into this whole shunt thing and the doctor’s orders are to drink Gatorade and don’t ski… who would’ve thought (well, the skiing part, yeah, I would’ve thought).  All in all, I have to say, I feel pretty good; the weakness in my left arm is still a major issue and I’m still having some pain in my neck from time to time, but I’m drinking the Gatorade and trying to work my way through it.  Quite honestly, I think there’s more going on than an electrolyte deficiency, but either way, it’s encouraging to know that whatever is happening, it’s not related to the shunt.  Because the fact is, like it or not, I’m now a shunt type of guy.

*Actually, there was a celebrity spokesperson on one of the sites I visited, a hobbit — or should I say Sean Astin — of “Lord of the Rings” and “Rudy” fame.  Not exactly an A-list celebrity, I know, and truthfully I don’t even know if the PSA he did ran anywhere other than the particular website it was on, but he is a celebrity nonetheless, and I’ve got to give him credit for taking the time to do it.  So, yeah, thanks, Sean.

pau.