My
name is Stephen Kozan, 31 of Harrisburg,
Pennsylvania. I'm a family man now,
husband to Melisa Kozan, and Father to Cameron & Aubrey Kozan, 4
yrs and 10
months old, respectively. My life is
complete now, and I couldn't be happier, except for the fact I live
with
MDDS. Seven years ago in August of 2003,
my life changed and I had no idea why or what was happening. I had recently gotten married, and my wife
and I traveled to San Francisco for our honeymoon.
On the 3rd day of our trip we took a boat
trip to the famed Alcatraz. At that
time, I had no reason to assess the water or question being on a 35
minute boat
ride in choppy, Pacific seas. Looking
back in hindsight, I wish I never stepped on that boat knowing what I
know now.
It
wasn't until the next morning when I woke
up, that I realized something was very wrong.
Admittedly, the night before, I had been drinking,
which prompted me to
think that I was still hung over as I walked very gingerly and
"unstable" to the bathroom. I
didn't put a lot of concern into how I felt, and I never mentioned it
to my
wife. It wasn't until later in the day,
down by the pier, that the "trampoline effect" that we are all so
familiar with, did not go away. I
couldn't focus or keep a train of thought.
When I walked, I felt as if I were bobbing like a
buoy in the
ocean. It was a sensation I had never
felt before. I started to feel nervous
about it, and I finally let on to my wife what was happening with my
body. I thought maybe it was a good idea
to check
into the ER and see what the doctors thought.
We took a cab to the San Francisco hospital and I
was seen, and told,
based on my symptoms, that I had labrynthitis.
I was given meclizine for the motion sickness and
was instructed to
"take it easy", while the symptoms eventually would subside.
Now,
back in Pennsylvania, I still had the
motion and balance problem, and I couldn't figure out why this was not
correcting itself. (If my story gets a
little choppy, it is because this was so long ago, and I just can't
remember
the exact time line of things or doctors I visited).
I contacted my family doctor, and was
basically told the same thing as the S.F. hospital did.
There was no mention of Mal De Disembarkment
or anything of that nature. I was sent
to Tristan Associates for an MRI of my brain, with and without contrast. That came back negative for
abnormalities. I began seeing a
Neurologist, Dr. Vickery, who thought I might have Benign Positional
Vertigo,
to which he performed the Epley / Cemont procedure.
I had to stay upright for several days so
that the inner ear crystals would reposition themselves.
(Of course this is not what I had, so the
procedure did not work). All of the
doctor visits, trips to the MRI facility and Neurology Center occurred
over the
course of 2 or 3 years. My symptoms were
evolving, coming and going. I couldn't
figure out why the bobbing sensation would go away, and then come back. When I traveled in higher altitudes, my
symptoms got worse. I had stopped
driving in the mountains of Pennsylvania for fear of sparking up my
symptoms. I lived in fear and became
very depressed. I noticed my mood had
simply changed. I was becoming angrier,
less patient, and more irritable with people.
My wife noticed changes in me. I
attributed this to the feeling I had. I
COULD NOT STOP ROCKING! The only time I
achieved any sort of relief was thankfully, lying down.
Once my body physically stopped moving and I
could calm down, my "swaying" calmed down. I
used to attack my day with the thought of
"if I can just get through the day, I'll eventually lay down around 9pm
and this will go away".
As
more doctors’ visits were sprinkled in
here and there, and more MRI testing was done, I eventually stumbled
into dumb
luck. My wife and I were watching TV
when a show came on called, "The Woman Who Wouldn't Stop
Rocking". I think you're all very
familiar with it. In fact, I'm quite
sure most of you were turned on to "MDDS" after watching it. I actually couldn't believe what I was seeing
on TV. EVERYTHING that was being
discussed was happening to ME. I looked
at my wife and said, "That's it!".
"That's what I have!".
I immediately searched the web, and like bricks to
the face, the MdDS
Foundation website came up, and I was totally in shock.
For starters I couldn't believe I wasn't
alone. Of course I'm not at all happy
that many others, like you, have this terrible affliction, but I
actually felt
relieved I wasn't alone. I took all of
the Foundation's information to my Neurologist, Dr Vickery, who claimed
he had
heard of this, but in his words, "This isn't quite at the forefront of
our
practice yet". So here I was,
paperwork in hand, waiting for the miracle pill to fix me...and nothing.
I
was sent to Drayer Physical Therapy
Institute for Vestibular Therapy, because there were rumors out there
that this
is what fixed people like me. Long story
short...it did nothing for me. It spun
me into more of a depression and I felt like I had nowhere to turn. I truly felt alone. I'm
very thankful I had/have my wife (and now
my children), as I love them very dearly, and they keep me very
motivated about
life, despite the daily agony I go through.
So despite being stonewalled again by modern
medicine, I, at least, had
an answer to my condition! It was a
start. It was something tangible I could
wrap my brain around. I wasn't
"crazy". Because no one around
me knew what I was talking about, and could not relate at all to my
symptoms. I could at least say, "Here!
read this
website...do you get it now?"
After
another visit with Dr. Vickery, I
pleaded with him to help me. Now while
he wasn't very knowledgeable with MdDS, he was a very compassionate and
caring
doctor. I was not treated like a number
with him. The only thing he did (which
turned out to be a mini-life saver) was to prescribe xanax for me. I was to take .25 mg 3x per day "to see
how it goes". Believe it or not,
after a few weeks, whether by the pill relaxing me or actually having
some effect
on my symptoms, I started feeling better.
I was not rocking as much. I
did
not have the head fullness or foggy sensation.
Several months went by, and I almost felt I didn't
have "it"
any more. I had gotten a bit overconfident
and weaned myself off of the Xanax. Slowly
but surely, my symptoms returned and the nightmare was coming back
again. It was at this point that I found
Dr. Robert
Slater in Drexel Hill, PA, via the MdDS Foundation Website. I visited with him, and he was VERY
sympathetic to my condition, and was very well versed with the
condition. He had seen patients like me,
knew of their
troubles, and actually helped them with certain medications. He prescribed valium and ativan for travel
(whether by car or plane), to "dope my vestibular system up" and
freeze it during travel. It was meant to
quell the symptoms and not have them spike to a higher level. I found this very helpful.
It has been quite a ride the last seven
years. From numbing needles being stuck
in the back of my head, to rotary chairs, to irrigating the ear canal,
or Epley
maneuvers, holistic doctors, family doctors, neurologists, MRI testing,
vestibular therapy, and various medications, all I want to do is take a
shower
without feeling like I’m going to fall over!
So
currently, I'm not someone with MdDS. I'm
someone living with MdDS. I look at life
differently now. I view my life pre-2003,
and I now have a
life post-2003. I had to find a new
normal. There's a great quote from a
popular
movie called Tombstone, by the late Doc Holliday, who said "There's no
normal life, Wyatt, there's just life."
Somehow I've learned or trained my brain to live
with this. I no longer can ride on boats,
I no longer
can jump on a trampoline with my kids, and I no longer can ride roller
coasters. The list goes on.
I'm okay with that. I
do what I can do, and live the best way I
can and know how. Do I still have days
where a grown man like me wants to cry?
Yes. But I always have
to tell
myself, there are people who are worse off than you, and there are
people who
are better off than you. The cards have
been dealt, and I have to play them. I'm
hoping and praying every night for a cure.
I'm
so thankful now, in 2011, seven years
after my first encounter with MdDS, that there are wonderful doctors
out there
who are dedicating their practice and time to helping find a cure. And I'm elated to know that this has been put
on the front burner, and not the back.
We can educate all the new "unfortunates", as I like
to call
them, on what exactly they have, so they aren't wandering around
thinking
they're crazy, not knowing what their condition is.
I'm confident that one day we will be cured,
and our children and our children's children will not have to suffer. I'm grateful to those like Dr. Cha, and I'm
in debt for her work with this. Most
importantly, I consider myself extremely lucky to have such a wonderful
support
system with my wife, my kids, my family and friends.
They make me who I am, and make me want to
live the best way I can with what I have. I'm going to have a lot of
bumps
ahead, and awful days where I just want to shut it down, but my faith
will keep
me going.
My
advice to anyone would be getting a
support system. Love your family, love
your friends and be loved. It makes a
world of difference.
You're
not alone.
