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Date:         Wed, 7 Oct 1992 02:00:40 EDT
Reply-To:     "(Bill McGarry)" <wtm@sheldev.shel.isc-br.com>
From:         "(Bill McGarry)" <wtm@sheldev.shel.isc-br.com>
Subject:      Handicap Digest # 2954

                             THE HANDICAP DIGEST

                                 Issue # 2954

                         Wednesday, October 07, 1992

Today's Topics:


                                ******


                    Re: HR 5450 To repeal ADA, any info?
                                Back surgery
                                   Fashion
                                  Re: PAIN
                                    Pain
                             rsd medline search
                                  12 Steps
                            Re: General Interest
                              Let's Get Started
                             Iatrogenic illness


                                ******


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Subject: Re: HR 5450 To repeal ADA, any info?
From: Eric.Bohlman@p3.f89.n129.z1.fidonet.org (Eric Bohlman)
Organization: FidoNet node 1:129/89.3 - BlinkLink, Pittsburgh PA


 ST>  EB> Edwards and Dannemeyer both lost in the primaries.
 ST>
 ST>   Do you know if they had introduced those bills before or after the
 ST> primaries?

I know the Edwards bill was introduced before, since the Oklahoma primary was
last month.  Dannemeyer dropped out of the House race to run for Senate, and
he lost back during the California primary, whenever that was (WHY does this
country have close to a year of primaries????).  Dannemeyer was one of the
House's leading opponents of the ADA in the first place (his pet cause is
gay-bashing, and he managed to convince himself that the ADA was primarily a
gay-rights bill).  One time he introduced a resolution condemning Nelson
Mandela's visit to the US; the resolution specifically compared Mandela to
Willie Horton.  He was also among the first to state publicly that mandatory
prayer in the public schools would have prevented the LA riots.  He tends to
go in for conspiracy theories, like a "cell of homosexuals" running HHS.  He
sometimes acts as if he thinks he's a reincarnation of Joe McCarthy.

--
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Internet: Eric.Bohlman@p3.f89.n129.z1.fidonet.org




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Subject: Back surgery
From: Jeffrey.Vandyke@f14.n279.z1.fidonet.org (Jeffrey Vandyke)
Organization: FidoNet node 1:279/14 - Project Enable, Dunbar WV


BP>Can somebody provide me with some information about fusions and back
BP>surgery.  I need a fusion.   I'd like to hear from people who have gone
BP>through it.  please tell what your experiences were like and aboout the
  I have spinal muscular atrophy and had most of my spine fused
(Herrington rods inserted) round about 10 years ago. (That's what happens
when you get old -- the memory goes). I had about a 90 degree bend in
my spine. The pain at the time was so high, I loaded up on aspirin
before going to bed and still hardly got any sleep. Had a 1-stage operation,
meaning they did all the straightening at one time, instead of going in
a month after the 1st surgery and straightening me out further.
   Depending on the severity of the curve, they would have 1-stage,
2-stage, or 3-stage operations. The third stage involved taking a
hammer & chisel to the spaces in the spine, because by that time there
wasn't any give left in the spine to straighten out. I was out in record
time -- 3 weeks and 2 days, and didn't have to wear a body brace for
6 weeks after surgery, because I didn't wait on the surgery until it was
life-threatening. Spent several months in severe pain (but not NEAR as
bad as a number of people on these echos are in everyday).
   OK -- now I've given you a few of the gory details, let me tell you
some good things.
1) They are much better at controlling the pain now. All they sent me
   home with back then was enteric coated aspirin.
2) Hospital stays take less time now.
3) Fewer people need to wear body braces following surgery, now. Note
   that I knew someone in 1974 that had this done, and she had to spend
   a YEAR in a body CAST. Things sure have changed.
4) I sit up straight now, or at least pretty near, and that helps
   everything.
5) I would be dead now, if I hadn't gone through it back then.
6) I HARDLY EVER have ANY back pain anymore, except a little when I lay
   down (and that maybe for 15 seconds or so).
In other words, it was the best thing to ever happen to me except for
getting married to my wonderful wife Alice 6 years ago. If you need the
operation, I wouldn't hesitate. It will only hurt bad for a while. Saves
a world of pain later.

 * SLMR 2.1a * Member, Off-Road Wheelchair Association

--
Uucp: ..!uunet!bunker!hcap!hnews!279!14!Jeffrey.Vandyke
Internet: Jeffrey.Vandyke@f14.n279.z1.fidonet.org




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Subject: Fashion
From: Jeffrey.Vandyke@f14.n279.z1.fidonet.org (Jeffrey Vandyke)
Organization: FidoNet node 1:279/14 - Project Enable, Dunbar WV


SS>Today I have been doing a demo of my BBS at an Exhibition and was asked if
SS>I could post a message looking for info on any Manufactures or Retailers of
SS>Clothing companies in the UK or USA (or any where else I think) that
SS>specilise in Fashions for people with disabilites.
  There are several. One WAS called E&J Avenues, and they recently got
renamed to Avenues, Inc. or something like that. I buy all my jeans
from them, as nothing else I have tried really fits.
  Another is Wheelies Bentwear. I hear they make jeans that bend at the
knees for sitting. I'm going to try them out one of these days.
  There are some others, too but I can't think of the names right now.
If you want, I can research it and probably get you a dozen names or so.

 * SLMR 2.1a * Member, Off-Road Wheelchair Association

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Internet: Jeffrey.Vandyke@f14.n279.z1.fidonet.org




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Subject: Re: PAIN
From: Cindy.Barnes@f22.n375.z1.fidonet.org (Cindy Barnes)
Organization: FidoNet node 1:375/22 - Ken's BBS, Montgomery AL


[This is from the Chronic Pain Conference]

 >Actually, I was, according to the neurosurgeon, OK to lift, CORRECTLY, just
 >about anything within reason by the time I re-injured myself.  I realize,
 >however, that what and HOW I was doing it was NOT correct, and that's
 >probably...*probably* what caused the disc to bulge and pop its' little
 >self out of hiding between those vertabre again! :)

I had a feeling this is what happened. I have been real careful with what I
lift these days. I had my first sub day as a PE teacher on Friday. One of
the little kindergarten kids wanted me to pick her up, but I was good and
told her I wasn't allowed to pick her up. She asked why and I told her a
little bit about my back and she showed a good bit of understanding when she
said she would make sure I didn't pick her up. :-)

 >that cuz the MRI was inconclusive due to the scar tissue).  He tried a
 >couple different anti-inflamatory drugs, but I had terrible reactions to
 >all of them.  One of them I even had trouble breathing while taking it.
 >Wierd.

It sounds like you have an allergy to some of the ingredients in the
anti-inflammatories you were given. Have you tried Cama? This is the one I
use and it works great. It is mostly asprin, but it also has magnesium oxide
and aluminum hydroxide in it. You can find it under the name of Suprine as
an OTC drug. I have been using it for about ten years. When the docs want me
to try Motrin or Advil or any of those other anti-inflammatory drugs I tell
them I would rather stick with what I *know* works. They give in. :-)

 >I let the muscles get de- conditioned (and gained almost 20
 >lbs!!!!!!!!!!!!!!) and was a wreck physically and emotionally.

I gained 15 pounds this summer! I hate carrying all this extra weight. I
have cut back on what I eat, but so far I have only dropped a couple of
pounds.

 >All in all, I'd say keep swimming, be very careful with the bowling (I
 >haven't even thought of trying that, but I'm going to try x-country skiing
 >this winter, Dr. said OK), and LIFT CORRECTLY!!!!!!!!!  I can't stress
 >that one enough.

I should be back into the swimming in another couple of weeks. I am waiting
for the therapy place to reopen their indoor pool. They said it needed some
repair work so they had it closed during the summer so it could be ready by
the fall. I am being real careful with what I lift and how I lift it. If I
think I will have trouble lifting it I call my boys to do it or I find
someone with a better back. I am *not* going back for more surgery unless I
have to!

I wish we had snow so I could learn to ski. Think we could get some of that
lovely stuff down here? I am sure Linda will just *love* me for it. }:-)

 >As for future surgery, maybe your doc is right and you won't need to go
 >through that if you continue strengthening your back now.

If you get tired of upper NY come down and visit. I'm sure Linda and I can
find something for the three of us to do. I'm not sure if it would be legal,
but it would be fun.

Cindy

--
Uucp: ..!uunet!bunker!hcap!hnews!375!22!Cindy.Barnes
Internet: Cindy.Barnes@f22.n375.z1.fidonet.org




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Subject: Pain
From: Nadine.Thomas@f10.n300.z1.fidonet.org (Nadine Thomas)
Organization: FidoNet node 1:300/10 - Aztec Maximus, Tucson Az


[This is from the Chronic Pain Conference]

Hello Mary....

I just happened to be reading the echo and saw your post quoted by
someone.  I wanted to say that one of the NON-addictive pain
medications that does work is called Toridal (not sure on the
spelling).  The only problem with it is that it is only in
injectable form.

You might want to ask the doc about it.

I have Lupus, Rheumatoid Arthritis, and diabetes.  I have been in
terrible flares over the past two and a half years and I have had
to take pain medication on a daily basis.  Yes, physically I am
considered addicted BUT because of my constant monitoring with the
doctor and those very close to me in my support circle I have NOT
abused them.  I am a firm believer that this situation will quiet
down and then I will deal with decreasing the pain meds and
stopping taking them.

While I don't condone just giving pain meds for anything and
everything I do believe that if there is enough pain a person
should not be denied.  I also use relaxation techniques and tapes
as well as biofeedback.  I find that at times some of that does not
work and then I have to ride out the time trying to use
distractions as best as I can (computing, reading, television,
radio etc.).  I have to use a lot of common sense with all this
too.

Well, take care of yourself and I hope I haven't jumped in where I
don't belong.

Nadine

--
Uucp: ..!uunet!bunker!hcap!hnews!300!10!Nadine.Thomas
Internet: Nadine.Thomas@f10.n300.z1.fidonet.org




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Subject: rsd medline search
From: Ruthie.Hoffman@f223.n260.z1.fidonet.org (Ruthie Hoffman)
Organization: FidoNet node 1:260/223 - Interstellar System, Vine Valley NY


[This is from the Chronic Pain Conference]

 > Try putting the tens on your face. WOW! its great at parties!

I'm hoping you mean this as a joke. Actually, if you get the
electrode near or on your temples you can cause SERIOUS problems.

--
Uucp: ..!uunet!bunker!hcap!hnews!260!223!Ruthie.Hoffman
Internet: Ruthie.Hoffman@f223.n260.z1.fidonet.org




------



Subject: 12 Steps
From: Michael.Rooney@f737.n106.z1.fidonet.org (Michael Rooney)
Organization: FidoNet node 1:106/737 - AirBoat OnLine, Houston TX


[This is from the Chronic Pain Conference]

KJ> I am a quadriplegic who lives with a variety of chronic pains-some very
KJ> bad and others minor in comparison. I also am a recovered alcoholic of
KJ> 3+ years now. I have found the 12 steps and faith in God to be great
KJ> assets not only in dealing with my alcoholism but also the chronic pain
KJ> which is a daily part of my life. My alcoholism was terrible and took a
KJ> heavy toll on those around me, but it is very minor in relation to the
KJ> pain I must deal with on a daily basis. I have also found this

Actually I find the pain easier to deal with and much less destuctive
both physically and mentally than the alcoholism. The toll it took
on me and especially my family was enormous. As to the pain, I have had
it for so long that it is now a part of my life and it is the only way
I know how to live. I wouldn't know what to do or how to act if I were
normal again.<G> I sometimes think about how close I too came to being
a quadriplegic. In 1979 I had C1 and C2 seperate when the cartilage
disintegrated and I spent about six months like that doing the things I
always did and just putting up with this incredible pain. Finally on
a Friday at work it became so bad I couldn't even think so I called the
doctor whom I hadn't seen in several months and he took x-rays and
told me to go to the hospital immediately. I refused and went home.
That night it was so bad I called him and he told me to meet him first
thing in the morning and not to drive, which I did anyway. The disks
were squeezing on the spinal cord and the slightest good bump would have
severed it. That was the last time I ignored a doctor's advice.<g>
That is the reason I feel fortunate to only have pain and limited
movement. That old saying about GOD looking out for drunks sure was
true in my case. As you said, faith in GOD is a great asset in dealing
not only pain but with every day life.
Take care, Mike...

 * SLMR 2.1a * When in doubt, mumble.

--
Uucp: ..!uunet!bunker!hcap!hnews!106!737!Michael.Rooney
Internet: Michael.Rooney@f737.n106.z1.fidonet.org




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Subject: Re: General Interest
From: Kathleen.Mcintosh@f181.n264.z1.fidonet.org (Kathleen Mcintosh)
Organization: FidoNet node 1:264/181 - Les's Corner BBS, Richmond VA


[This is from the Chronic Pain Conference]

 [DV] It has been shown that excessive pain delays the healing
 [DV] process. It is better for you to get the medication BEFORE
 [DV] it all wears off, it is easier to maintain a level of pain
 [DV] relief than to attain it. Does that make sense?

It makes a lot of sense.  What some medical professionals are now
beginning to realize, is not only that adults are sometimes
under-medicated, but that a lot of infants and children are also.
People seemed to have assumed that small children don't need or
shouldn't have as much pain relief as adults.  What is the basis for
this kind of thinking?  Do they think the child won't remember the
pain, or that they don't feel pain as adults do?  Incredible.  It
really slows healing for everyone to have to go through pain.
Thankfully, all this is changing.

--
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Subject: Let's Get Started
From: Phyllis.Cohen@p0.f33.n125.z1.fidonet.org (Phyllis Cohen)
Organization: FidoNet node 1:125/33.0 - BODY DHARMA ONLINE, Oakland CA


[This is from the Chronic Pain Conference]

 02 Jul 92, Linda Cummings wrote to Arthur Saus:

 LC> But the interesting part of our discussion was that
 LC> we both started having back trouble after we had had an epidural during
 LC> childbirth. Now, that question is: Is there a connection between the
 LC> epidural and the disc problems?

 And Arthur Saus responded on July 5:

 AS>We don't think so.  There is absolutely no evidence to support this.
 AS>There is certainly plenty of evidence that many physiologic changes
 AS>occur due to the process of pregnancy and childbirth however.  Anyone
 AS>who has gone through that realizes there are back pains that occur
 AS>during pregnancy long before an
 AS>epidural is placed to help with the labor pains.

 And, on 02 Jul 92, Cindy Barnes wrote to Arthur Saus:

 CB> Can a pre-disposition to arthritis of the spine weaken the discs, so that
 CB> when an epidural or a spinal tap, or a mylogram are performed that disc
 CB> will develop a weak spot which then can herniate/rupture?

 And Arthur Saus replied on July 5:

 AS>To the best of my knowledge...NO!  Please see my messages to Linda for a
 AS>further discussion of the anatomy of this area as it relates to epidural
 AS>injections or a "spinal tap".

Hi, Linda!  It seems to me that you have a very interesting
hypothesis  which is subject to testing.  We know from Arthur that
the kind of pain  you, Cindy, and Jocelyne are experiencing is
thought to be due to other  factors, not your epidurals or spinal
taps.  However, we do not know if  he had time to do a literature
search on this, or if someone right this  very minute is conducting
a research study to see if such procedures  increase the risks of
developing conditions such as yours.

 Then on 07-08-92, Linda Cummings commented to Arthur Saus:

 LC>Cindy had an epidural during labor, whereas I didn't.  However, we have
 LC>both had spinal taps, and I have had three myelograms, whereas Cindy has
 LC>only had one.
 LC>
 LC>This is pretty fascinating to us, Arthur.  I wonder if any in your
 LC>profession have talked about this?  Is it possible?  It sure seems to be
 LC>the case with
 LC>Cindy and me...especially the Degenerative Disk Disease (arthritis)....

My training is in social science research, and my head is swimming
with what  would be required to really answer your question.  It
would best be studied  over time, and there would be two ways to
go.

The first would be to take all patients administered epidurals,
and/or  spinal taps (or a 'random sample' of the same) and the
follow them for five   or ten years to see what proportion
developed your condition.  There also   would have to be one or
more control groups of 1) patients with similar   conditions who
did not have these procedures, and 2) 'normal' controls, all  of
whom would also be followed for the span of the study.

The second would be to take current cases of serious disc problems
such as  yours (I don't know the technical name, if there is one),
and get a full  history which would then be coded and analyzed for
common factors.  This  would yield statistics as to whether all
folks having such problems also  had spinal procedures just prior
to developing the problems.  The one  problem with this is that
'correlation does not imply causation.'  There  is no way to know
for sure if everyone would have developed the problems  anyhow, for
some other reason.

Now, Linda, all you have to do is go to medical school, or get a
Ph.D.  in Public Health, and then you can apply for a grant and do
the research  yourself! <grin>

Seriously, though, you could do a literature search, and if
nothing  appeared, approach someone at a University teaching
hospital to see if  they were interested in conducting a study.
YOU could make it happen!

Phyllis

--
Uucp: ..!uunet!bunker!hcap!hnews!125!33.0!Phyllis.Cohen
Internet: Phyllis.Cohen@p0.f33.n125.z1.fidonet.org




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Subject: Iatrogenic illness
From: Phyllis.Cohen@p0.f33.n125.z1.fidonet.org (Phyllis Cohen)
Organization: FidoNet node 1:125/33.0 - BODY DHARMA ONLINE, Oakland CA


[This is from the Chronic Pain Conference]

 On 07-08-92, Linda Cummings commented to Arthur Saus:

 LC>It just seems mighty strange that after an invasive procedure, all this
 LC>stuff pops up in a few years.

 Hi, Linda!

"Iatrogenic disease" is the term used to refer to illnesses caused
by medical treatment.  There are entire books written on the
subject!

I just did a subject search for 'iatrogenic' on the University of
Calif.'s  card catalogue and turned up 96 records.  Many are
duplicate entries or  foreign language publications, but there
still are lots and lots of books  on the subject.  The largest
number are on the iatrogenic effects of drugs,  but there were a
number of general compendiums that look like they discuss  all
kinds of iatrogenic disease, and some discuss iatrogenic effects
of  surgery.  The only one I've actually read myself is "Medical
Nemesis" by   Ivan Illich (1976).

I also know a number of people whose Multiple Sclerosis, Chronic
Fatigue  Syndrome, or environmental illnesses were triggered by
surgery.  I don't   want to get into a fight over whether the
surgery caused their disabilities ...the stress of their surgeries
might have been the last straw on systems that were already
overtaxed.

It's just too many people becoming more severely incapacitated
after  invasive procedures for it to just be a coincidence.  These
procedures  are often life-saving, but sometimes the price we pay
is to continue  living somewhat less able-bodied than we were
before.

Phyllis

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Internet: Phyllis.Cohen@p0.f33.n125.z1.fidonet.org




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                  End of Issue # 2954 of the Handicap Digest

                                ******
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