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[Ed. Note: The opinions expressed below are solely those of the
author. They do not represent the opinions of the editor, publisher,
or this publication. Anyone with a medical problem is strongly
encouraged to seek professional medical care.]
By Sara
My son Isaiah was diagnosed with Chiari almost five years ago. It all
started because he was having severe leg pain. Pain so severe he would sit
still, hold his legs and cry. Occasionally he would have headaches. Always
with the pain in the back of his head. Finally, after months of this he was
seen by a Neurologist and had his first of several MRI’s. With the diagnoses
of Chiari Malformation came a lot of fear, tears, and questions. These
questions went unanswered until I started researching the disease on my own.
Knowing a little bit more about this disease, I started documenting what
was going on with my son and went to his doctors with a little more
knowledge and a lot of the “right” questions.
The next year Isaiah went from leg pain, occasional headaches to more
frequent headaches and having what he calls “stars” in his vision to passing
out in the middle of the street. This landed him in the hospital. I was
told― it happened because of the Chiari, BUT not severe enough to do
anything yet. Just watch him. Frustrating? That word I would not use just
yet.
Over the next couple of years, Isaiah had a few more MRI’s and I kept
being told not severe enough to really treat, just keep an eye on him.
In 2003, things changed dramatically for Isaiah. He started having
episodes where he would be trying to talk and it was as if he was struggling
to finish what he was trying to say, his brain was not working right. In
addition, this started to interfere with his schoolwork. Nevertheless, this
still was not enough for his doctors. Then he started having intermittent
blind spells―spells where he would go totally blind. He never knew when this
would happen, it just happened. Now I have a terrified little boy on my
hands and I am trying to comfort him, reassure him that he was not going
blind. While doing this I am also dealing with his school trying to get them
to have safety precautions put into place and trying to get him seen by
doctors. The first doctor he sees, after his pediatrician was an eye doctor.
Nothing wrong that glasses could not fix. Isaiah was still having blind
spells. A neurologist could not see him for a few more months. In the
meantime, it was suggested maybe he was doing this for attention; struggling
with school, having problems adjusting, having problems coping with what was
going on with me. You see during this time my doctors diagnosed me with
syringomyelgia and Chiari (1). Isaiah saw me go from being ok to using a
walker to being in a wheelchair.
After about ten doctors, six nerve blocks, medication on top of
medications my condition “mysteriously” stabilized (the syrinx in my back
closed up). I am now walking on my own. I am a little better, still having
problems but I deal with it, especially since I know what is wrong. (NOTE:
syrinx size does not matter, will still cause problems. The doctors said
mine was no bigger than a pencil)
Anyway, Isaiah and I went to see a counselor. His diagnoses? Something
more is wrong. In the meantime, Isaiah is steadily getting worse. His blind
spells are coming more frequently, his speech is really bad now, and he is
struggling big time. Now I am frustrated and mad.
I remember hitting my knees and screaming “No! No more! God if you are
real show me what to do, guide me to where I need to go!” I had had enough.
Between dealing with my own pain and doctors, I could not allow nor watch
these doctors do this to my precious son. Therefore, I cried out to a higher
power, one I have not called on for some time. When I got up off my knees, I
knew what I needed to do. Some how fight, with every thing I had and I knew
he was going to be right there!
A month later, my family and I sold majority of our possessions,
packed up what we did not sell and moved to North Carolina. That was in
February of 2004. In May of the same year Isaiah had another MRI and we were
told his condition had worsen, the doctor recommended surgery. His surgery
date was set for June 4, 2004. I cried all the way home and all night.
June 4th 2004- surgery day
I remember the surgeon telling me the
procedure would only take 2 hours. Well, 2 hours came and went, my precious
son was still in the OR. Praying and trying not to be upset, I sat and
waited. Finally, the surgeon came out and talked to me. I remember him
telling me “we had some problems, but Isaiah is fine and should be in
recovery soon, you’ll be able to see him then.”
When I first saw my precious baby, I cried. Stroking his face I
thanked God for bringing him through, thinking now he will be ok, it is all
over. Wrong! Isaiah healed quickly and before too long he was back playing,
playing basketball (which he loves), and being a little boy.
August school starts. He is ready and excited! A few months later,
November, he starts having a lot of neck pain, ok that’s understandable.
Then December passes, then January. By mid-month, he is having problems
swallowing and is choking on his food. Here we go again, with the tests and
the doctors again. By March, Isaiah has to be pulled out of school, he is
having swallowing and choking problems, headaches that are making him black
out, and he is constantly missing school because of appointments. At first,
the doctors thought there may be a tumor, the tests come back, and there is
no tumor. So what’s wrong? From what I understand, we are now dealing with
the damage Chiari has done before his surgery. You see, the surgery stopped
his Chiari, but now we have to deal with the damage Chiari had already
caused.
Isaiah has severe migraines that affect him in several different
ways: slur his speech dramactically, cause an immediate black out (no
warning) or he will have severe pain. He also has acid reflux disease, which
causes his swallowing and choking problems, he has extremely bad eyesight in
both eyes, and he has chronic functional constipation disorder. (which is
what we dealt with all this past week, almost put him in the hospital) from
what his doctors tell me this is all part of Chiari Malformation (learned
something new this week!) Isaiah was diagnosed with this disorder 4 years
ago, first time someone besides me made the connection.
Dealing with this disease is very frustrating whether as someone
who has it, as a parent of a child who has it or as a friend to someone who
has it.
As a parent it is frustrating because you have to come to terms
with the fact your child is sick, even though they may not look like it at
times. (I deal with this all the time from spouse, relatives, neighbors
etc.) Then you have to help your child find new dreams to have especially
when they realize the ones they had they will not be able to go after.
(Isaiah wanted to be a wrestler) You have to be strong and firm to get them
to take the necessary medications, go to the umpteen tests they need or the
doctor after doctor appointments required All the while being sensitive
enough to know when they are in pain, because a lot of time they will not
tell you until it is too late. Furthermore, you have to be their voice,
especially when it comes to school. I know with Isaiah and school, if I did
not stand firm and forceful, with out being mean, they would have him
sitting in a classroom but not participating in any activities. I am
constantly repeating, “Let him be as normal as possible with certain special
boundaries.”
As a person that has this disease it can be very frustrating at
times. I personally have a lot of severe nerve damage to certain areas, like
my hands, legs and other areas. I have good days and bad days. The most
frustrating part of dealing with this disease is trying to get someone who
is not dealing with it to understand. Meanwhile, trying not to come across
as if you know more about this disease than the doctors do. So what are you
left with? You have to find your middle ground, your comfort zone. I have
learned to rely on a Higher Power, how to speak up loudly, and when to keep
my mouth shut.
In closing I would like to say―we have to remember WE are not
alone! We have each other. It is up to us to help educate others and make
awareness of this disease known! HOW? By talking to others constantly and
not giving up! By banding together, we can conquer this disease called
Chiari.
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