“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.”
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.