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Friday, December 10, 2010

Congenital Anosmia

When I was in the third grade I started to go through the typical tween puberty changes and had some pretty bad B.O. Mom tried and tried to get me to wear deodorant but I refused so she had me smell my arm pits prior to school and when I got home she had me smell them again (thinking that the stench would leave me begging for some deodorant). She was shocked when I told her I couldn't tell a difference. She ran little smelling experiments putting all kinds of things under my nose to see if I could smell them. The only thing I had a reaction to? Ammonia. And that's only because it burned.

That is the day that we learned I couldn't smell. The doctor concluded that I must have been born without it and since then it's been an interesting topic of conversation for people and a great thing for me to use when playing get-to-know-you-games like 2 truths and 1 lie. We have assumed that since I cannot smell anything that I also cannot taste much. Plug your nose and eat something, it changes the taste right? Now imagine if you never had the recall of the smell of that thing. Just knowing what it does smell and taste like helps you to taste it even when you can't smell...but I don't have that memory recall since I've never smelled anything.



This pretty much explains why I am a picky eater and not a fan of cooking (I must follow recipes EXACTLY...season to taste? Good luck!). It also explains why I like some strange things together (granola bar with peanut butter and canned tuna fish) and enjoy eating things other people wouldn't (stale marshmallows anyone?). I taste mostly by texture and by appearance. I can taste some things if they are very strong and I can tell the difference between biter, sour, etc. I love ice cream but you wanna know the truth? I honestly can't taste much of it. All the flavors are typically the same for me other than the toppings which add a texture difference.

I've never made a big deal about my lack of smelling and tasting abilities. It is what it is and I've never known what it's like to be able to smell or taste so I'm not missing out on much. It honestly never bothered me until the day my dad's mom passed away. All my cousins were fighting over her clothing so they could keep her scent and be able to remember her by it. I'm missing out on the ability to recall memories due to certain scents. That made me SO sad and feel like I was truly handicapped for the first time.

In high school Dad and I decided to try to look into why I can't smell and see if it is something fixable. We went to Eagleston and they told me the only way to really find out was to take a CT Scan and Dad just didn't feel comfortable with that. Why expose his 16 year old daughter to radiation when it wasn't necessary? I went on with life and enjoyed feeling like there was potentially something that could fix the problem someday. Hope is a wonderful thing and it got me through!

Then Tripp passed away. Tripp passing away seriously has been a life changer for me on so many levels and this was one of them. As I held Kye one day (a rare moment of him being so adorably sweet) I thought of Tripp and I thought if something were to happen to Kye I would never know his smell. I would never smell something random and have it remind me of him or remind me of a memory we shared together. It crushed me. It brings tears to my eyes right now writing this just thinking about that. I hate the idea of living my whole life without ever being able to smell my babies.

When Zach and I first started dating he told me the sweetest compliment - that he loved my natural scent. Of course I'd love to know what my husband smells like too but when Kye was first born and everyone told me how sweet he smelled I was so envious. I decided that I need to quit walking around thinking there's a chance "someday" that I'll be able to smell and find out if there's a chance NOW. We only live once and I'm missing out on a part of life. Sure, it's not as bad as it'd be if I couldn't see or hear but it's still a part of this world that I want to experience.

That day, holding Kye, I got the urge to KNOW so, for the first time ever, I started to Google. I simply typed in "I can't smell" and was surprised at how many responses popped up. I've never met anyone who was born without smell (although I've heard of people losing it later in life for various reasons) and even when I've mentioned it to doctors no one in the medical field that I've met had heard of anyone either. It felt good to read that I'm not alone and I actually found a blog that a girl has allll about her smell-less life. Here is her blog if you're interested in reading more (I know I am!).  I especially enjoyed the part about tasting as it is very similar to what I am able to taste.

It made me feel less alone to know that other people are facing the same thing that I am (and to know it has a name! "Congenital Anosmia (which btw spell checker refuses to believe is a word)" but it also made me more anxious to know if there was anything I could do about it as some of the info I found said it could be a genetic issue. No mother wants to think that they could be passing along something like this to their children! I called around and found a local ENT dr and went in for a visit.

He looked at my nose and told me he didn't see anything odd, and, since I was born without the sense, that it probably isn't a brain tumor or something (that's a good sign!). Once I told him about my birth story he said it's probably the cause. I was face up or down or whatever is the wrong way and the dr who delivered me pulled me out with forceps (which they no longer use!). The forceps actually slipped down my right temple. I was born with a HUGE cone head and a pretty bruised up little face. I also have a permanent indention in my right temple. It's not super noticeable but I do sometimes have to edit it out of pictures because if the lighting hits it just right it'll make it look pretty bad. The nose dr. said that any type of head trauma can cause the sense of smell to be altered and that a CT Scan would give us more information. He said it was good that I didn't do the scan back when I was 16 because in the last 10 years those scans have come a long way and now omit MUCH less radiation (actually they said it omitted less than I'd get from just walking from the building to my car!). He said more than likely that nothing would be able to be done but at least the CT Scan would help us figure out what's going on. He also prescribed me some nasal spray to try as if people lose the sense of smell it often helps bring it back to some degree, although he doubted it would help me at all.

When I left that day I was pretty devastated. Thankfully Robyn was off work and could listen to me cry and vent! Hearing that there was most likely nothing to be done just crushed me but I was hopeful that the CT Scan would at least confirm it. I don't want to walk around having a false hope ya know? Ignorance really isn't bliss at all is it?

Having the CT Scan was no big deal. It was pretty much just like getting teeth x-rays at the dentist. The whole appointment was less than an hour long, I got the scan then we looked at the results together. It was cool to see my scull. It looks just like all the other sculls I've ever seen but my nose ring looked awesome! The doctor went over the whole scan with me, pointing out my sinuses and nerves and such. A bunch of stuff I didn't fully understand but he said he did not see any nerve damage like he had expected to find and that it would take them physically opening up my brain to be able to really get an exact reason as to why I cannot smell. He said his best guess is still that it was from my tough delivery and that I could have had some type of damage that went away with time like swelling in my brain or even blood on my brain. He also said that humans are machines and that machines often break with no explanation. He's had people come in who wake up one morning unable to hear with no reason why. Somethings in life there just aren't answers to.

The only "abnormal" thing he found in my head is actually still pretty normal. Something about my nose tunnel or whatever is curved to the left and he said if I get headaches that I probably most often get them on my left side and that's why. I do get headaches. And I do most often get them on the left side so at least I know the reason now, right? He told me the best (well only) thing to do was to try the nasal spray and if it helped that I could stay on that for the rest of my life if needed.

So basically I paid a ton of money for a scan that left me knowing just as much after I got it as I knew the day prior. Annoying! And now I'm basically stuck never knowing for sure what caused me not to smell or if there's anything to fix it.

On the positive side I've been using the nasal spray every day and DO think it might be helping (or do I just want it to help so badly that I'm imagining it?!?). My nose does feel clearer right after I use the spray and if I put something DIRECTLY up to my nose and sniff really hard I swear I can smell a little. Maybe?

I'll keep trying the nasal spray and keep you guys posted on any progress that may occur. For the time being though I'm just going to keep on trying to shrug it off like to doesn't bug me when someone asks me to smell something. Keep acting like I don't care when people say how lucky I am not to be able to smell (while secretly thinking that I'd KILL to be able to smell a dirty diaper or other "nasty" scents). Keep loading up on deodorant and mints for fears of my own potential odor. Keep hoping that someday I'll be able to know for myself if food is spoiled, if my breath is bad, if there is some kind of gas leak. And keep reminding myself that although I most likely will never be able to smell my son or future babies, at least I can see their sweet faces, hear their baby laughter, and hold them in my arms.

2 comments:

  1. Our son was also born without a sense of smell. He kept saying he didnt know how to smell and we always thought he was joking. We finally took him to the doctor who ordered CT scan to see what was up. The diagnosis was that his olfactory nerves never developed for some unknown reason. 
    I am trying to find some sort of detector that would alert him to smoke or CO2 and maybe propane. IF anyone is aware of something like this please let me know. Although he is only 12 we are worried about the future and how he will  know about  dangerous things like smoke, burning food, spoiled food, noxious fumes, gas leaks, and other danger signals. 

    ReplyDelete
  2. My 16 year old daughter also has congenital anosmia and was also a face-up forceps birth

    ReplyDelete

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