In the past month or so, I have had several people e-mail me
and ask me to tell my story on how this all happened to me. They have
also requested that I also need to give more information on the disease
that has stricken me. So this is my attempt to try to explain.

I was involved in an accident in a steel mill in February 1993.
I was working for a scrap yard inside a major steel mill in
Northwest Indiana. My job description was a burner. And what I
did was use a cutting torch to cut scrap metal for the blast furnaces.

Late one afternoon, ten minutes before the end of my shift, another
guy and I were cutting up a very large structure. He was on one
side and I was on the other. What we both didn't know was, we were
both cutting the same part of the structure. All of a sudden,
a large piece of steel fell towards me. It hit just below my left
knee and slid down my leg, twisted my ankle and crushed my left foot.
They estimated it to be between 600 and 800 lbs. I was taken to the
hospital where they found a hair line fracture in my ankle and it cut
part of the ankle bone away. They told me they couldn't really be sure
if that was all that was wrong because of the swelling. They couldn't
tell what else was wrong, if anything, until the swelling went down.
There was only one problem, the swelling never went down.

After the hospital, I went through the normal runaround with the mill's
doctors. Dealing with worker's comp. and doing everything I was told
to do and see the doctors of their choice. I saw four different doctors
through this. The first one (company doctor) said there was nothing
wrong with my foot. But I was experiencing severe burning and pain
in my foot along with the swelling that still hadn't gone down.
The second doctor I saw was the first one to diagnose me with R.S.D.
(Reflex Sympathetic Dystrophy). This was about 3 months after the
accident. The R.S.D. was the reason for the burning and the pain I
was enduring. It was also the reason the swelling wouldn't go down,
After I was diagnosed with this, I was sent to another doctor. This
doctor was supposed to know about this disease. He sent me through
strenuous physical therapy and confirmed the diagnosis of R.S.D. with
extensive testing. The therapy wasn't doing any good. He then sent
me to another doctor to work with him. She did a total of thirteen
epidurals, and 10 foot blocks. All these were done along with the
physical therapy. The longest any of these lasted was two days.
Then the burning and pain came right back. After all this was done
to me, they were not able to put the R.S.D. in remission. There is
no cure for this disease. They told me then that there was nothing
else they could do for me. The doctor gave me a PPI (Permanent Partial
Impairment) rating, which was a permanent 48% loss of the use of my left foot.
The doctor then told me that I should settle with worker's comp. There
was nothing else he could do. We didn't know anything about how worker's
comp. worked. We didn't know we had any kind of choice. We thought we
had to settle because the doctor said there was nothing else he could do.
We received a little over $7000 for this. We found out that Indiana is
one of the lowest states for worker's comp. payments and settlements.
This all took less than one year. It was settled in November 1993.

I wish we had the internet back then when all this was happening.
After this experience it only got worse. I had lost my job at the mill.
They told me with my injury, they had no job for me at the time and
they were laying me off. I knew they meant permanently. The union I
was in did nothing for me at all. What it came down to is, I was just
a number on a time card! So now there I was with no job, a bad limp,
and the pain, burning, and swelling still there. At this point, I had
stopped seeing a doctor for quite some time. With no job, and my wife's
income the only money coming in, it wasn't enough. And with three kids
it was impossible!!

In May 1994, I found a job. The owner knew of my injury and was
willing to give me a chance. I was hired there to be the parts manager
of a lawn mower parts warehouse. I was able to deal with the burning
and pain pretty well most of the time, but by the end of the day, I
was feeling it. My foot would swell up at the end of each day, and the
burning got pretty bad along with the pain. Especially if it rained or
it was cold outside. But I just kept dealing with it the best I could.

Finally in October 1994, I decided to go see another doctor. It was
getting to hurt and burn more and more. The swelling still had not gone
down in all this time. The doctor I went to see had told me he knew
all about the disease. He was a podiatrist. He then told me I needed
surgery after taking some x-rays. He told me the cause of the pain and
the swelling was due to a calcium build-up that was across the top of
my foot. Well, he did the surgery, and it left me on crutches for awhile,
and in a strapped on boot cast. After I healed from this, the burning and
pain still persisted. He sent me to see yet another doctor in Chicago,
a one hour drive away. This doctor performed acupuncture on me. I went
to several appointments for this. Again I only got very short relief.
And don't let anyone tell you that this doesn't hurt! After I stopped
seeing this doctor, I went back to the one that referred me to him.
I could tell he didn't want to pursue this anymore, or he didn't believe
I had R.S.D. because he didn't want to give me anything else for the pain.
Well, again, I stopped seeing a doctor and continued to work as I did before.

About 6 months went by, and the burning and the pain started to spread
up my left leg. We were never really told exactly what this disease could
do to me. I kept pushing myself to keep on going at work. Some days I came
home and could barely move. It started to affect my moods alot. I was getting
edgy with my kids and my wife, but more with the kids.

In the first part of 1998, my wife and I decided it was time for me to go
seek medical attention once again. I was beginning to hurt way too much,
and it had spread to the top of my leg into the left side of my groin.
I called around the area, trying to find someone that knew about the disease.
I got lucky to find one right in the same town I am from. In my first
appointment with him, he examined me and I told him the story behind it all.
I then told him about the last doctor I had seen. He knew the doctor, and
had some not too nice things to say about him. Then he told me he should
never have done surgery on me. Surgery can cause the disease to spread.
He then told me about this specialist in Chicago that works with R.S.D.
patients, and she is one of the best in the country on this disease. Right
then and there he got on the phone to her and told he my story, including
the not so nice things he said about the other doctor. He set up an
appointment right over the phone for me to see her.

My wife was unable to go with me because of her job, which I thought was
no big deal because I thought I'd hear the same things I've been told
before. During my appointment, the doctor and I discussed many things.
This is when I finally found out what this disease was going to do to me
if they couldn't put it into remission. I was shocked to hear what she
was telling me. I will tell this information in the next section. We
then discussed my options on what we could pursue next to try to put the
disease in remission as soon as possible. She told me the further this
disease gets, the less chance of success.

So I drove home that day stunned with everything I had just been told.
Emotionally, I was so confused. When I arrived home, my wife and I sat down
and I told her everything the doctor had told me. And the worst part she
told me was there was no cure for the disease. I was scared to death at
this point, and my wife just held me.

The next appointment my wife went with me. The doctor went back over the
options with both of us. The doctor told us she would like to do a bier
block on me first. We agreed. Well, this didn't work too good. It lasted
the trip home. Then she did another one, with stronger medicine. Again,
it didn't work. I had the same results. So now the depression is really
starting to take effect and this is one thing that is associated with the
disease. All I could think of is, what happens if they can't stop this in me.

So the next appointment, we start to discuss the next course of action.
She was going to do a lumbar block with different medicines. Again, this
one didn't work. Not even lasting the trip home this time. Now, I'm
really scared. After talking to people in her office before the procedure,
they were telling my wife and me how much relief they got from this block.
Most of them had a couple of days relief, and one had went into remission.
So I wasn't feeling too good at this time.

The next week, my wife and daughter went out of state for a death in her
family. I stayed home with our young sons. They were only going to be gone
a couple of days. The next night after she left, I had taken a fall. My
boys were in bed, and I got up and went out of the living room and my
german shepherd shot in front of me, and tripped me. I went down hard
into the wall, hitting my head and slamming hard against the wall. The
next morning when I woke I started feeling the burning in my right leg.
I called my wife and let her know what had happened. I was scared to death.
My wife couldn't leave from where she was, because she had rode with family.
I assured her it was okay, but by that time it had spread into my right foot
and into my chest and arms. I didn't know what to do. The next morning it had
it had spread into my face, head, eyes, and mouth. My wife was due home
that night. I had called the doctor and she told me the fall was the cause
of the rapid spreading. My wife returned home, knowing all that happened,
by phone. Since then, the burning and the pain gets unbearable sometimes.
Now my depression is really starting to get to me. I am on an anti-depressant
for it, but sometimes it gets to be way too much to handle emotionally
and physically. Since the fall, the doctor has done a couple more blocks
and both unsuccessful. She has also put a catheter in me with an external
pump administering pain medicine in my spine. After about two months on
this, she decided to put a permanent pump in me, which I have now. This
is putting medicine directly in my spinal fluid. So far, they have not
found the right dosage to help me. I hope someday they will. I have
recently been approved for disability which I will start receiving in
November. But until then, I have to keep myself going against my doctor's
and my wife's liking. I'm just lucky to have a boss that is willing to
let me do as little as possible. Just until I can quit. But even doing
as little as I do, I come home in alot of pain and burning. I know my
wife hates to see me like that when she picks me up from work, but I have
a responsibility just like she does, to our kids. I am only working right
now two weeks a month and only 5 hours a day, when I can get through them.
I can only work when she is on the afternoon shift, because I cannot drive
anymore because of the medicines I am on and from the disease. I'm not
looking forward to being stuck in here all the time, when the disability
starts. I have never been the type that could stay still for very long.
It's already getting to me. It's hard to keep my emotions in check anymore.
To me, I feel like I'm becoming useless. If it wasn't for my wife, I couldn't
have made it this far. She had been the strength that I lost inside of me.
And without her, I wouldn't be here now. I love you Janice!

I hope this information helps you more understand about this disease. And
open your eyes to a disease that's been around for more than a hundred
years, since the Civil War as far as they know.

If you know anyone that has constant burning after any kind of surgery or
accident, and the pain keeps getting worse instead of better, please tell
them to find a doctor to diagnose the problem. Alot of doctors don't know
about this disease and therefore can't diagnose it. Some doctors don't
believe someone can be in pain like that if they can't find the reason for
it. This disease is not easy to diagnose. I got lucky it was diagnosed
early. I just wish it could've been stopped. If caught early enough, it
can sometimes be put in remission.

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