smell – spew

D-DAY +70

I think this about satisfies the update interval on the sinus surgery recovery.

FROM A READER:

Sean,

I loved your blog on your sinus surgery experience. I went through the same procedure 8 days ago and your level of detail in it really helped me understand what to expect beforehand.

On your blog (D-Day + 2: Friday) you noted that you had noticed increased resonance in your voice. I am going through the same thing now and mine is quite noticeable especially over the phone. I had a pretty normal voice before so having it sound as it does now concerns me quite a bit.

My question is, did your voice go back to normal or is the increased resonance still there.

I appreciate your response.

MY RESPONSE:

thomas,

thanks for reading. i did it for you. meaning, i wished that level of detail was out there for me beforehand. i couldnt not blog it. i even tried to get a videographer client of mine in the room to shoot it. he was willing to sign whatever waivers, cause he too had the same surgery. but hospitals bristle at the notion of video cameras within their op rooms.

ok, the voice. its totally different. not in a dramatic way. i mean, i dont sound like a muppet. but i dont sound the same. i too notice it more on the phone, because all phones amp your voice into your earpiece. i get it more on my “N” or “M” sounds. like: “a bag of m & m’s”. my friends and co-workers alike are polite & they hold-back in their candor, but they all agree that yea, something is different about the way i talk. that: i sound normal, just different.

whats weird is that from the perspective of my physiology; the architecture of my new sinus cavities, i totally understand why. but i am only just now, 2+ months on, getting used to it.

my doctor isnt evasive, but he’s also pragmatic, insisting that its not fair for him to either provide an answer after only 2 months, or for me to be getting settled-into the fact that this is forever. i love him for this: he reminds me that the healing process for this may be closer to 10 months than 2. i dont know what you had done, but i had my entire ethmoids reconstructed. the pathology report reads bone + cartilage removed as well as tissue/polyps. so i’m prepared to wait for shit to settle down.

but keep in mind: for me anyway, if the change in the tenor (if thats the right word) is the downside to this, then i’ll gladly accept it. for i can smell again. i havent felt this healthy since college. i’m biking my commute 16+ miles a day, i get up when i wake up, and mentally, i am clear as a bell. the success of the surgery has positive cascade effects i have yet to realize.

D-DAY +30

i have perhaps reverted back to the state of things long before i knew that Anosmia wasnt forgetting things when you hit your head. That place where i spent more than 30 years as an organism that could faithfully interpret information from the nose & the mouth. Its an easy place to fall back into. Its precisely where smell & taste work their magic: where you dont notice them until they’re absent.

A month & change post-op. 5 weekly appointments with Dr Rust. Each less grizzly then the last. Each with me leaving having heard that i am healing beautifully, that he could park a car up there, and that no, i cannot resume swimming laps. Regardless of how well i am healing, its too early to speculate let alone start asking questions about my sense of smell or the return of the bastard polyps.

I did have a touch of an infection up there 3 weeks ago, which Dr Rust said was not only mild, but totally expected in the weeks & months following such surgery. So after a quick taper of Prednisone & 14+ days of antibiotics, OF COURSE i can smell & taste. That always happens when i shove those two drugs up me. So its double-down tentative to take stock in how well i can smell these past few weeks. For inside of 1-2 more weeks, i could be back to 10%. So day by day. I’m enjoying what i can while i can. Changing a diaper when i squeal in delight cause i can smell it from across the room. Dragging 2-fingers under my nose after pumping gas. And being San Francisco, smelling delightfully kind weed being smoked quite near-by on my walk to the ferry in the afternoons.

Pretty much, for the past 2-3 weeks, everything smells & tastes like they did on this day.

Per doctors orders, i’ve continued the nasal rinses. But they’re horribly disappointing just now, arent they? No more debris. No more clottia. Just the same damned saltwater i’ve just mixed & squirted up there. On an interesting note however, is how much of that rinse gets up into the difficult sinuses it never reached before. After each bottle, after i stop dripping then blow, i can get a full 1/2-ounce more simply by bending over for 10 seconds so the cavities can drain. I then can smile at people for the next 30 minutes as fast-dropping dribbles can unexpectedly evacuate my new nose.

Of all the things the past 5 weeks have given me, i would say the best has been the mornings. Once i would wake up and not know which direction my nose would go that day. If it started compacted, i was doomed to that fate all day. If it was oddly clogged, i might have a chance of breathing well from at least one of the pipes. Either way, mornings sounded like audio feeds from a rendering plant, with matching discharges into the shower or 12+ kleenex blows before i left the house. i now wake up with both barrels bored-out and free of matter. Which isnt to say that the shape or architecture of my sinuses are in a fixed position. Because from one morning to the next, the air-flow is simply different up there. Its either going to be something i can feel or something i can hear. But either way, its clear and mostly dry. Which is a dream.

I have moved from 1x weekly appointments with Dr Rust to every other week, with my next on Tuesday 5/19,

D-DAY +1

For what my body has been thru in the past 24 hours, I’m most surprised at how bounce-back I have been. I have these dueling urges. On one hand: to carry on, walk around, be vertical. Which begets the opposing urge to give into the physical chimes to lie the fuck down and just repair. To that end, I’ve got a mother and wife making sure I’m not up for more then a few minutes. And a stack of Netflix.

My pain level, to use the standard hospital rating, is an unbelievable 2 or 3. No need to take any more of that crooked fucking Vicodin; just Tylenol. I had prepared for pain levels double this. So to only be grappling with a sinus pressure, a familiar discomfort, is a pleasant surprise.

Today is also the day I get the tampons taken out. The packings, which undoubtedly are a significant factor in the pressure I’m feeling up there, were placed an unknown distance up my sinuses, leaving these heavy black strings trailing out my nose and taped to my cheeks. I look like some feral cat whose picked & lost a fight. It will be good to get back into Dr Rust. Just to check-in, ask some questions, get some oral history of how the surgery went. Unfortunately, save for those few groggy moments when I woke from anesthesia, I haven’t seen Dr Rust since.

Sitting in the same brightly lit examination room I was in when Dr Rust first explained the myriad of best & worst case scenarios, I’m aware for the first time since that the deed is done. I’m on the other side. Sitting there alive. Post-op & pain free. Surreal. In the room with my mom, and she & Dr Rust are chatting about HER deviated septum, when he pulls out his spreader forceps and offers to take a gander up my moms nose. More surreal. And kinda funny, cause my mom obliges. So there we both were, Dr Rust and I, peering up my moms nose.

Dr Rust explains that he’s going to pull out the packings, and that I am going to bleed. A lot. For me not to worry. That he’s done “oh… only a few hundred of these.” When I ask where the tampons are up there, he informs me that they’re packed into the ethmoid sinuses, the honeycombed shaped cavities between the eyes. Hoe. Lee. Shit. We’re talking a lot further up there then I thought.

But first, he soaks some cotton balls in a solution not unlike the Vicks nasal mist: where it contracts the mucus membranes and opens everything up. Stuffing a soaking-wet full-sized cotton ball up each nostril is again, not too painful: just terribly uncomfortable. That weird line between sinus-tickle and sinus-pressure, each producing a physical reaction resembling pain. Whether it’s the residual anesthesia, or a general numbness of the whole area, I’m just relieved that I can’t feel pain up there. Like so many things in Life, this has been NOTHING like the warnings people gave me prior.

About 5-7 minutes later, Dr Rust comes back in, and places one of those pink kidney-shaped plastic dishes in my hand and positions it under my chin. Here we go.

The next few minutes of my life will be ones that I will neither forget nor ever be able to accurately recount. If my mom wasn’t there to witness it, I don’t think I would have ever believed it possible. And she only SAW it. She couldn’t HEAR what I heard.

First, he tilts my head back, spreads my nostrils with the forceps, and needle-noses the cotton-balls out. One. Two. Each a mix of red & black, slapping into the dish followed an involuntary drip of tears from my eyes.

Next, he precedes to finger-nail the surgical tape from my cheeks, to free the cat whiskers attached to the tampons. No fear. No apprehension. No worries. In hindsight, I suppose I should have been concerned. I mean, if you know a dentist is about to do something such as this, your body goes into reaction mode, to prepare for an onslaught of negative feelings. But with this, none. Perhaps because we all kept talking, a bit about the colour of the cotton balls, a bit about just general stuff. I can’t remember.

But I knew I was in for a ride when with one hand he twisted-up & knuckled the strings, and with the other, he squarely palmed my forehead. As if for leverage. Inside of 2 or 3 short seconds, the tampons, which looked like halves of french toast sticks, were out.

There was no one-two-three. There was no advance direction. There was only the pull. And that fucking sound. Like eggshells cracking. A lot of eggshells. My head pivots at the neck in response to the resistance. My vision goes all funny in that moment. With one action later, my head is downward, over the kidney-shaped tray that I am still holding. Thank god I didn’t close my eyes for any of this. For close on the heels of the tampons, out both nostrils and my mouth, comes an unholy stream of blood. Mostly bright red (fresh) blood. But also some bits the same consistency & colour as charred steak.

The tears are pouring out of both eyes, so I hand my glasses over to my mom without looking. I don’t want them to fall into the tray, the bottom of which is now completely filled. For a long & solid 15 seconds, both nostrils flow uninterrupted. Then for another 20, they drip with the cadence of a drum roll. Then for the next 5 minutes at least, they drip with a slow taper. Eventually, the right nostril stopped altogether. But left nostril never stopped dripping, even well into the night.

I have never seen so much blood come out of my body at one time. My mom remembers that it was all she could do to fight back the urge to react as if I was hemorrhaging; that this routine post-op procedure had gone terribly sideways for her son. But we were BOTH re-assured by Dr Rust’s warnings of blood, as well as his relaxed reaction to the blood. The force with which he had to pull, the crunching sound, and all this blood: As hard as this all was to reconcile, it was normal.

I have ALWAYS had a penchant for gore. I was that kid in 8th/9th grade who had Freddie Kruger and pages from Fangoria up on my walls. I was one of those early adopters who frequented Rotten.com long before they went paid-only. Same with Ogrish. I was fascinated with how the human body reacted to trauma. What we looked like. How our limbs & internal organs looked rendered free from our bodies. I know it sounds macabre, but I didn’t so much enjoy these images & videos as I gained strength from them. Almost as if I was able to feel alive by these graphic reminders of how close accidental death is at all times.

So to be staring down into this dish filled with a half-inch of blood spanning no less then 4 shades of red, and the black & white mottled tampons coagulating within, I was fascinated. Only a small fraction of the people I know would share such sentiments. Even regarding their own discharges. You know who you are.

Following the tapering of the dripping, Dr Rust went back up there with a dentist-like vacuum to clear away some of the debris that had either coagulated or otherwise failed to drip. Again, tickle. No pain. Another moustache dressing and a few handshakes later, and I was slowly shuffling with my mom back out to the car. Whether it was the loss of that half-pint of blood, the physical debt of the actual tampon removal, or just too long being vertical, I was spent. I nearly fell asleep in the car ride home. With messy dressings.

I can’t really remember much about the rest of the day. In retrospect, a lot of the post-op days have blended into each other. I know I took 3x Tylenol and had another bowl of soup. And sleeping. A lot of sleeping. With visions of french toast sticks on strings.

CONVERGENCE

Moments when time compresses or expands or does whatever it does upon a convergence of the senses. In these moments the world and the now are so profound and so close as if never before. We are present here, as our mind is washed clean of the detritus of obligation. We feel a proximity with ourselves and the works of the world around us. We
recall our compression & distractions from previous days in the same routine.

It’s almost always accompanied by music. But for me, today, the convergence was of all five:

Touch, the bask of a late afternoon warm sunglow amidst a shelter from the cold embarcadero wind.

In concert with sound, courtesy of a smart playlist of impossibly emotional music I’d forgotten I owned.

Add in a bit of eye candy that comes with the people watching that 2x shore-leave cruise ships affords San Francisco

And finally, smell. Glorious nose, which begat taste.

The Boont Amber pint I enjoyed whilst I took all this in was prolly my second best beer I’ve ever had. Behind the Lagunitas Pale I had on the ferry when all this realization came due.

Tears in my eyes as I took long deep inhales from the bottle. Realizing that in this moment, I may never have had so accute a definition of olfactory information ever. Followed by a sip & stall of the ale over the back of my tounge, bubbly bong sipping, taking in the little fireworks display behind my closed wet eyes.

ANOSMIA

“Anosmia (ænˈɒz.mi.ə) is a lack of olfaction, or in other words, an inability to perceive smells. It can be either temporary or permanent. A related term, hyposmia, refers to decreased ability to smell, while hyperosmia refers to an increased ability to smell. Some people may be anosmic for one particular odor. This is called “specific anosmia” and may be genetically based.”
– (http://en.wikipedia.org/wiki/Anosmia)

I have Anosmia. That is, I am an Anosmiac.

I have lost my sense of smell, and therefore what I am able to taste.

I may spend the rest of my life without these 2 senses.

The cause of my condition is nasal polyps that were first detected by an Ear/Nose/Throat doctor (otolaryngologist, otolaryngology) about 5 years ago (2004). At this point, I still had what I think was full use of my olfactory nerves. My reason for going in was a string of severe sinus infections. When the sinus infections became more frequent & more severe, a CT scan was ordered. Despite some of the take-away words the ENT used like ‘dramatic’ and ‘extensive’, he didn’t recommend surgery for to remove my polyps and scrape away the sinusitis (the crap that’s lining and more or less occupying over a third of what should be free flowing passages & air-filled cavities).

I think it must have been around 2 years ago that I began to notice the complete loss of smell for a few days to a week at a time, completely unassociated with a recent of pending sinus infection or upper repertory flair up. It would just go away for a bit, and come back. Perhaps once a month this would occur. Again, for a couple of days only.

Slowly over those 2 years, the ratio flip-flopped. There are now roughly 2-3 days a month where I am aware of my sense of smell. The smell of coffee grounds is my main YES/NO test. If burying my face in a tin of freshly ground coffee triggers a smell response, I know its there. I know I have a day or so. Then weeks on end with nothing.

I suspect everyone can relate to the condition though, for everyone has had a head-cold or other upper-repertory flair-up and have had their 2 intertwined senses shut off or reduced. Its one of the most commonly cited characteristics of a cold. But when it comes to the total loss of it, most simply cannot relate. Most will deny it, but its one of the senses that gets trivialized. That unlike sight or hearing, the loss of the others are marginalized. No concessions can be made. No one knows. If it comes up, it has to be announced.

I cannot smell my children. I cannot smell my wife. I no longer gather any form of enjoyment from the foods I eat or the beverages I drink. The world around me is reduced to a colourless fog. If there were a gas leak, I wouldn’t know. Selfish as it sounds to mention amongst these, what else is there in life one can indulge in without the smell or taste associated with it?

In late 2008, I began to see Dr Gary Rust, a new ENT, who took a different approach with my condition. He ordered a new CT scan, this time with a technology called a Stryker Protocol (http://tinyurl.com/3z4rby) which would assist in the positioning and guidance of the surgeon’s tools. Unlike the previous ENT, Dr Rust not only informed me that I was definitely a candidate for surgery, but he phrased it in a way I needed to hear it:

“You’ve been doing the treatment of it for over 5 years. Throwing antibiotics and prednisone at it when it flares up. Maybe its time to try the other way.”

And with that, I was in. I would give it a shot. After he’d had a chance to look at the 1000’s of high-resolution images the CT scan pumped out, I asked to see them. As busy as he was, he brought me into his office and loaded the software & images up. He showed me a deviated septum on my right that would have to be broken in order to work that side. I saw the tell-tail black-white-grey scales of these slices of the human body. White is bone, black is air, and grey is tissue. I saw clearly that in ALL my sinus cavities, the thickness of grey lining the edges was occupying what looked like half the available space. Above my eyes (frontal sinuses) and most significantly in the cavities behind the cheeks (maxillary sinuses) was clear pockets of air, with clear lines of grey tissue that doesn’t belong. But in the cavities high-behind my nose (ethmoid sinuses) and all the complexities of the turbinates were COMPELTELY grey. No black. Only on some slices was I able to see any clear passage of black/air leading up thru the turbinates and into the frontal & maxillary cavities. No wonder they’re so caked with gunk.

That was February 2009. The surgery is scheduled for Wednesday April 8th.

He was very pragmatic about the chances though. I mean, from a litigation point of view, I’m sure he’s quite hesitant to give me, the patient, ANY outlook one way or the other. But he apologized and said it’s really a 50/50 thing.

50% chance the polyps would/could come back
50% chance the removal of the sinusitis would/could come back

And while he’s never in his experience seen or heard of a colleague experiencing it, the list of worst-case-scenarios didn’t really hit me until I re-told them to others:

Death. Working only a scant millimeters from the brain
Meningitis & other possible brain infections
Blindness. Again, working up & around both optic nerves.
Vision complications.

And for the capper: only a 50% chance of my sense of smell getting restored.

And in the 5 weeks since he gave me these outlooks, I have been too busy planning for the surgery to dwell upon them. Physicals, multiple different blood/lab work runs, chest x-rays, form after form. Calls with my insurance, drafting a will, triple checking my life insurance. All of these things luckily have worked towards distracting me from the procedure and most importantly, from what my post-op life might be like.

If I could slice it up, I’d say if I was anxious about the procedure, only 25% of that is devoted to dying on table without a proper goodbye to my family, my children, or a slow protracted one due to infections.

Mostly, my anxiety is stemming from possibly having to go the rest of my life without ever again having a sense of smell and therefore the ability to taste.

Perhaps I am paying for a life of eschewing positive thinking for pragmatic realism. For almost every situation of my adult life, I *always* kept close and considered a wide range of possible outcomes; from the positive to the negative. Which has been in such stark contrast to the positive-only thoughts that Anna would bring to the table. I would constantly be dodging claims of pessimism or negativity. My response was that it’s not negative or pessimistic to be realistic. To consider amongst your plan the less then agreeable outcomes.

So here I am trying my damnedest to conjure up just some of those positives. For all I have read and all I have research on anosmia has been along the lines of support groups and testimonials about it never coming back. Some of these people have developed anosmia in a variety of different ways. Head injuries, congenital, or idiopathic, where there is no clear cause. But many of them are from polyps and sinus diseases like my own. And many of them talk about how surgery was worth it, to remove the shit that doesn’t belong. But they all have come out the other side with permanent anosmia.

I know, I know, I’m reading blogs & testimonials for people who have lost it. There simply are not as many citations of people for whom sinus surgery for remove of polyps WAS successful in restoring the sense of smell. Where are the support groups for the main success flows? Seems we must dig deeper for rosier news from this camp.

But the thoughts remain. The fear of how deep this depression can or will go are starting to haunt my very core. I’m not ashamed of fear. I wholly respect fear. I’m just not accustomed to it. I’m afraid of being afraid. I know my will to live is strong, for I have my children & my family to think of. The thoughts are real though. Not specifics, like you must be thinking I’m thinking. But in general: to go the rest of my 25-35 years without something I consider being an integral part of what is satisfying about this life. How? Will I be strong enough? If not, from where will this strength come? at a point in my life when I feel I am pressed against so many walls BESIDES this, who will I become as I attempt to deal with THIS on top & in addition to everything else?

Clearly, I need to talk about this more. I need to share this more. For I am not at all sure I can any longer shoulder the weight.