From: geb@cs.pitt.edu (Gordon Banks)
Newsgroups: sci.med
Subject: Re: Reflex Sympathetic Dystrophy..Does it spread?
Date: 21 Jan 93 16:49:48 GMT
Reply-To: geb@cs.pitt.edu (Gordon Banks)
Organization: Univ. of Pittsburgh Computer Science

In article <C0tBu1.5Iy@usenet.ucs.indiana.edu> graham@venus.iucf.indiana.edu writes:

>>Look, you asked the question, and I answered it.  What do you
>>mean "once and for all"?  No one here is God.  
>
>I'm not sure I understand.  It isn't necessary for one to be a "God" in
>order to provide a _definitive_ answer to a question.  If there is no
>definitive answer, then say so.
>
There is no definitive answer.

>>I told you it
>>did spread, and in my opinion, amputation was not the answer.
>>No one else volunteered anything, and probably few except Dr.
>>Nye have any experience with the disease.  Don't expect too
>>much from the net.  I realize your plight, this is a terrible
>>disease.  You'll just have to go with what your doctor is
>>telling you or see someone else for a second opinion, 
>
>"2nd opinion"?  When do I stop?  I've been diagnosed by over 7 different
>physicians, most of them supposedly well qualified to deal with RSD, and
>I hear different stories concerning treatment and whether or not it spreads
>from all of them.
>
Well, then, I suppose you've just got to judge for yourself.
If all 7 are different, then you aren't likely to get a consensus
here either.

>Sure, I can simply go with what my doctor says, and if he happens to disagree
>with _my_ claim that the RSD is spreading, and if we assume that you and I are
>both right in our opinions that it _does_ spread, than I'm SOL somewhere down
>the road, and in real deep doo-doo.
>
Since I have patients in which it has spread to all 4 limbs, I can
tell you it does spread.  Now if you want to argue whether or not
it is real, there are even doctors who will argue that it is all
the the mind.  I think this is bunk, but I've heard it.

>I have heard two sides to this argument that the RSD "spreads", and
>frankly, I don't really know who to believe any more.
>
>What would be helpful is for some actual bibliographic references to
>medical publications that actually discuss this aspect.
>
>Again, I am sorry if it offended you.  That was not my intent.
>
No, you didn't offend me, I just wanted to emphasize to you that
you weren't going to get the "once and for all" answer to your
question.  Sorry, but that is just the way it is.  I haven't done
a literature search on it, so don't know what is there in the
literature.  I can tell you this, my patient with it in all 4 limbs
did remarkably well when she started using Catapres patches on her
feet.  There is an article on this in the rehab literature, but I
can't cite it.  If I were you and I hadn't used the patches yet,
I would ask my doctor about prescribing these.  My patient went
from not being able to touch her feet at all to being able to
walk again, which she had not done in 2 years.  If you would like,
I will ask my colleague, who did a fellowship with Roger Bannister
in autonomic disorders, about anything in the literature on spread
and amputation.  I know he is opposed to amputation, since he has
testified in malpractice suits against doctors who amputated.
Before you get too excited, I had another patient in whom the
patches didn't work, so it isn't a panacea.
>
>Yes, I _may_ need a new doctor.  That isn't clear right now.
>
There are probably only about 20 doctors in the USA who are
experts in the syndrome.  Are you sure you have visited even
one?  I think unless your doctor has published papers on RSD,
I'd look for someone who had before cutting off any of my
body parts.

>But that isn't the issue.  I asked for references about whether or not
>RSD _spreads_.
>
>I've yet to recieve _any_.
>
People don't have time to do this type of work for you.  It is
bad enough that we spend so much time answering questions.  To
do what you ask, I'd have to spend an hour at least in the library.
I just can't do that for the hundreds of people who have questions.
You can, however, do it for yourself, and most medical librarians
will be happy to help you.  You may have to pay something for the
search, but that is a pittance compared to the amount you've already
spend on your ailment.
>
>It is precisely because of this disagreement, both in terms of whether it
>spreads, and in terms of recommended "treatment", that _my_ case of RSD
>has been allowed to go essentially unchecked for over 10 months.
>
It is true that RSD must be checked as soon as possible if there is
to be a good result.  THis is usually done by sympathetic blockade.
I'm sure you must have had this.  Perhaps you've even had sympathectomy,
which would be preferable to amputation.

>This is not my fault.  It is theirs.  There must be a definitive answer to
>this.
>
Maybe it's no one's fault.  THere is no definitive answer with our
current state of knowledge.  I know this is hard to accept, but that
is just the way it is.  We are still ignorant men and not gods.
I suspect your doctors are doing the best they can.

>Likewise.  But, IMHO, it's better to go through life without one limb and
>pain than to have it spread and suffer considerably more pain.
>
How about going through life without one limb and having it spread also?

>Based on my past experience, I think I can safely say that the bottom line
>is that one simply has to decide who they will and will not trust on this
>issue, since "experts disagree".
>
Yep.  But first make sure they are all really experts.  I suspect
you are seeing some who aren't.  
-- 
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Gordon Banks  N3JXP      | "I have given you an argument; I am not obliged
geb@cadre.dsl.pitt.edu   |  to supply you with an understanding." -S.Johnson
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