Desperately seeking sense of smell

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by Vanessa Coria, 13News

WVEC.com

Posted on May 22, 2013 at 1:17 AM

Updated Wednesday, May 22 at 6:12 AM

WASHINGTON DC -- Imagine losing one of your five senses.  Smell, touch, taste, sight and sound are all vital in navigating the world we live in.  Millions of Americans live without one or more of their senses. For some, their senses are impaired; for others, one sense may be totally gone.

This is an inside look at my personal journey to regain my full sense of smell.  It doesn't seem like an impairment that would have too serious of an impact on a person -- like one who is blind or deaf -- but by some estimates, more than 21 million Americans deal with some type of smell loss or distortion and experts say it can significantly affect quality of life.

"This is a hidden epidemic, I mean millions of people have these problems," explains neurologist, Dr. Robert Henkin of the Taste and Smell Clinic in Washington D.C.  "The underlying issues about how we live on a daily basis are really related to our ability to taste or smell."

I speak from personal experience when I say  your sense of smell affects how everything tastes.  If, like me, you end up with severe smell distortions, nothing tastes or smells right.
 
Let's go back to the beginning.  It was a very hot day in July 2011.  I had just achieved one of my fitness goals.  I was finally able to do multiple kipping pull-ups.  On this day, it was a combination of heat, exhaustion and a drive to do those pull-ups that would leave me with a lasting injury.  I fell from a pull-up bar, cracked my skull on concrete and was diagnosed with a severe traumatic brain injury.  It wasn't until a few days later I realized I couldn't smell -- anything.
 
Initially, my concerns were with my brain and the throbbing, continuous headache which forced me onto part-time disability for several months.  No work, no exercise, no strenuous anything.
 
There also were the strange games my brain played with me when I tried to watch TV or read.  Even the teleprompter on the job made me see things.  
 
The headache finally diminished after five months.  All the while, I couldn't smell a thing.  Then came the phantom smells  I can only describe as rotten, rancid  fruit.  Months later, I began smelling some things, like coffee and cigarette smoke, both of which smelled the same to me. Both smelled awful.  I was suffering from what's called Dysosmia -- it's when your sense of smell is distorted.
 
My neurologist in Virginia Beach told me only ten percent of people with severe traumatic brain injury, which leads to loss of smell, regain their full sense of smell and that it could take six months to a year to regain any smell function at all.
 
While I was healing in every other way, the prognosis when it came to my smell loss wasn't good.  And that wasn't good enough for me.
 
So, I went to see an ear, nose and throat guy, an otolaryngologyst, to see if he could help.
 
Dr. Joseph Han is an ENT and professor at Eastern Virginia Medical School. He saw me in March 2012.  He confirmed what my neurologist told me:  there's not much mainstream medicine can do for smell loss caused by brain injury.
 
"Unfortunately, and this is something that I have to tell a lot of my patients, there aren't a lot of good treatments out there.  But, if they have something that blocks off their sinus cavities or nasal cavities, like allergies or polyps, that's reversible and I can treat that and that's easy to fix," explains Dr. Han.
 
He says only a small percentage of people in the U.S. deals with smell loss --  about one percent or some two million people -- but he acknowledges it can be detrimental to quality of  life.
 
"I mean, it can be miserable.  Smelling plays a lot of important rolls.  It helps us appreciate food, it helps us detect warning. Like, if you smell smoke in your house.  If you can't smell smoke, how are you going to know if your house is burning?  And then, there's personal hygiene, you know, how do you make sure that you are socially acceptable in the community," points out Dr. Han.
 
Good question.  My friends know the answer because I regularly ask them to give me a sniff.  Talk about awkward. But, they are good friends and are more then happy to do it.
 
Short of undergoing some experimental surgical procedure, where my olfactory nerve is totally scraped out, there was nothing Dr. Han could do for me.
 
That's when I started seeking alternative treatments, like reflexology and acupuncture, to no avail.
 
Then, came Internet research in my free time.  I found plenty of blogs and boards where people like me commiserated on their smell loss and its effects on their daily lives.  For me, it had taken away all my pleasure in food and drink.  Even simple things like the smells of Christmas -- pine, fresh baked cookies, candy canes.  The smells of the beach -- sea water, suntan lotion, the sea breeze.  All gone.  My all-time favorite food and drink no longer tasted or smelled good.  Bye-bye chocolate.  Bye-bye coffee.  Now you serve solely as a source of caffeine for 13News Daybreak.
 
It was at my breaking point that I discovered Dr Robert Henkin, a neurologist at the Taste and Smell Clinic in Washington D.C.  He's been studying taste and smell loss for four decades.  For people like me, he is often the last resort.
 
"The otolaryngologyst will say, 'Well, if you have polyps, you can't smell because your nasal passage is blocked.  The neurologist will say you can't smell with a head injury because you've sheered the filum.'   Well, there's some truth to both of those, but really it is not the answer.  The answer is that there are bio-chemical causes for all of this," explains Dr. Henkin.
 
At his Georgtown clinic, Dr. Henkin and his staff approach smell loss as a primarily bio-chemical problem.  He's the expert that estimates some 21 million Americans are dealing with some abnormality of  smell function.  
 
So, I took a road trip up to see him.  The doctor tested my blood, urine, saliva, nasal mucous and even analyzed my diet -- all to determine what's going on with my human growth factors.
 
"It's like if you have diabetes.  Iif you don't have enough insulin, then your blood sugar is not going to work very well.  It's the same thing if you don't have enough growth factors, you won't be able to smell and taste," Henkin explains.
 
An appointment with doctor Henkin is a two-day commitment.  On day one, which in my case was a Friday,  he collected  the blood and urine, analyzed my diet, did a physical exam and gave me an extensive battery of  taste and smell tests. In all, the appointment took about five hours.  I was sent on my way with homework --  a container to collect urine for a 24-hour period and a vial, in which to collect nasal mucous a.k.a. snot.  The urine was easy.  The snot, not so much.
 
Upon my return to the office the following Monday, the doctor collected my homework and shared his analysis of all of my testing.  Dr. Henkin says I can, in fact smell and taste, but not like I used to.
 
"So, you have the worst of both worlds  One, you have a loss of taste and smell.  And two, you have a distortion of taste and smell & they both go together."
 
Basically, Dr. Henkin says my brain is not making the right connections.  It has developed dysplastic pathways which have lead to my smell distortions.  So, instead of prescribing a drug to treat my problem,  Dr.  Henkin decided to perform Trans Cranial Magnetic Stimulation to treat the brain.
The goal is to inhibit the distortions at brain level.  It took just a few minutes and everywhere he used the device -  my face, head and shoulder - I felt a little tug.
 
That was in early April.  Now more than a month an a half after treatment, I feel I am gradually making progress.  I can smell more smells than before, however, they all remain distorted and inaccurate to what I know I'm actually smelling.
 
I've had two phone follow-up's with Dr. Henkin and another one scheduled for this week.  I've been keeping track of my progress and reporting to him.
 
If the Trans Cranial Magnetic Stimulation doesn't inhibit the distortions, Dr. Henkin says he may want to perform the procedure again or prescribe one of a variety of medications used to treat smell loss.  Stay tuned.
 
As for paying for a visit to Dr Henkin at his Taste and Smell Clinic, it is costly - as much as $3,500. However, you can get your insurance to cover it.   That's what I did.
 
Now, the waiting game continues.  I have a dark chocolate Godiva truffle with my name on it for the moment my senses are restored.

 

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