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From: Keith.Jones@f3.n157.z1.fidonet.org (Keith Jones)
Newsgroups: misc.handicap
Subject: Re: pain
Message-ID: <16456@handicap.news>
Date: 26 Jun 91 04:12:39 GMT
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Index Number: 16456

[This is from the Chronic Pain Conference]

  I live with constant chronic pain in my lower right side of my back,
my right hip, and ball of my right foot. The longer I sit, the worse my
back and hip pain becomes.
  I also have a spinal cord injury and all kinds of associated pain with
that disability (too much to go into here--- I use the spinal cord
conference for those problems. I don't want to scare you but the reason
I have the spinal cord injury is because I had terrible pain 7 years ago
in my left arm. I saw a doctor who diagnosed my problem as a herniated
disc. He told me I needed emergency surgery and that it was a relatively
simple surgery. I walked into the hospital and never walked out. My
spinal cord was bumped during surgery.
  If I had known then what I know now, I would NEVER had the surgery.
Has Tom gotten a second or third opinion? Have you tried a chiropractor?
Surgery, in my opinion, should only be done as a last resort. Surgery
many times does not help and leads to more surgery down the road. Once
cut, scar tissue forms and know all kinds of people that have scar
tissue impinging on nerves that has caused excruciating pain. No further
surgery can be done to alleviate their problem. I know many people who
have developed other problems from back surgery. On the other hand, many
people have it, it works, and they never have any further problem.
  I can well understand Tom's frustration as I have lived with my pain
for almost two years. I would try the most conservative methods first
before rushing into surgery. There is no answer for my pain and if
surgery were offered, I am not sure I would want it. I know when the
pain is bad it has literally driven me insane. At those times I would do
just about anything to relieve my pain. But surgery is not always
guaranteed and is an extreme to take for a quick fix. I would talk to
your doctor as well as several others before surgery.
  I also deal with the Industrial Commission (long story) and I know how
they can drag their feet and stall procedures with bureaucratic red
tape. They make it very inviting to jump at surgery once it is
authorized rather than consider alternatives. If you have a good
compensation lawyer (?), you may be able to try some other things.
  I am just throwing out ideas. I don't live with anyone elses pain. I
have mine and I have a high pain thresdhhold and consider mine pretty
bad. Pain is a subjective feeling relative to each individual. One man's
ceiling is another man's floor. Tom's pain sounds very bad and I hate to
hear about anyone in that much pain. I guess only he can ultimately
determine how much pain he can stand and weigh the rewards and risks.
  As a caregiver, your role is almost as tough (maybe tougher). I know
you want to help. People want to help me. But there is really nothing
you can do to make the pain go away and that is frustrating for you. I
frustrate others. For that reason I will not get romantically involved
with anyone at this time. I know that if you love somebody and they love
you, you feel that person's pain as though it were your own. I don't
want anyone to feel my pain (except others in pain who can relate). You
are already married so you don't have that option. All you can do is
listen and try to understand. Sometimes that is all you can do. Often
people make the mistake with me of trying to tell me what I should do.
Sometimes I just need somebody to listen. I don't want advice (though I
am usually subconsciously asking for it). There are caregivers echoes
with some of the BBS's (though I have never logged onto any of them)
that might help.
  I wish both of you the best of luck. Stay in touch. I will try and
help in any way I can.

                                             -Keith-

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