From: graham@venus.iucf.indiana.edu (JIM GRAHAM)
Newsgroups: misc.handicap
Subject: Re: Stopping RSD by Amputation
Date: 30 Dec 92 15:31:10 GMT
Reply-To: graham@venus.iucf.indiana.edu (JIM GRAHAM)
Organization: Indiana University Cyclotron Facility, Bloomington, Indiana
X-Fidonet: Chronic Pain Conference
Originator: wtm@sheldev.shel.isc-br.com

Index Number: 26931

To: Arthur Saus

 JG> I wonder if it is possible to stop the SPREAD of RSD by amputating
 JG> the affected limb?

AS> Probably not, although to my knowledge this has not been rigorously tested
AS> scientifically.  Based on the most likely theories of the disease however, I
AS> do not believe this would have much probability of success.

AS> As you know, RSD starts with a known injury (at least in most cases, although
AS> I do know of RARE exceptions).  The Sympathetic Nervous System gets involved
AS> in this process to exacerbate and continue the problems, but this PROBABLY
AS> happens at the level of the Spinal Cord, not in the affected extremity
AS> itself.  It certainly appears that there are effects of Sympathetic Nervous
AS> System involvement in the extremity also, but I believe this maintains the
AS> process rather than initiating it.

AS> Following this reasoning, amputation of the extremity MAY further exacerbate
AS> the problem, rather than cure it, since that amputation would be a further
AS> injury to the nervous system in that extremity.

Yes.  I'm aware of this.  In fact, I had a surgical sympathectomy in
November, 1992, and it failed to produce any relief, and fortunately,
did not exacerbate the RSD further.

 JG> Its presently about 6 inches below knee, in terms of pain and tissue
 JG> variations, but has been and continues to slowly "creep" upward.

AS> This is consistant with the "natural history" of this disease process.  This
AS> is exactly how it behaves if it is not treated.  My best recomendation is for
AS> you to see a physician who can confirm the diagnosis of RSD for you and begin
AS> therapy as soon as possible.  There is more than one way to treat RSD, and if
AS> you have tried one approach that didn't work, that just means it is time to
AS> try another (if indeed the problem is truly RSD and not something else).

Believe me, I'm an old hand at this by now!

I've had the RSD confirmed by a multitude of specialists, throughout the
course of the syndrome.  Not only do I have RSD, but I also suffer from
polyneuropathies, and it has occurred to me that a significant portion of
my pain is caused by the neuropathies.

I am aware that many diabetics also suffer from neuropathies, and some
actually end up with amputations due to intractable pain.

Is this true?

 JG> I am aware of several cases where it begins in the foot, and ends up
 JG> spreading to the entire body.

AS> I disagree with this unless you are intentionally exaggerating.  I agree that
AS> it may spread to involve the entire limb, but I have never seen good medical
AS> literature describe the spread of RSD to involve the whole body.  Can you
AS> quote your source of this "fact"?

Off the top of my head, I cannot quote you the medical literature, but would
be happy to dig it up when I can get to it.

One of my anesthesiologists, who claims to have had extensive experience with
RSD patients, told me that he had a few cases where the RSD spread from the
original sight of injury, to the entire body, and several where the RSD
spread from the sight to only the same side of the body.

In fact, this particular anesthesiologist mentioned that some RSD patients
eventually do elect for amputation, and I've read this in some of the
literature on pain managment (specifically, textbooks on pain management)
as well.

I've also heard stories from a few of my physical therapists.

Not long ago, I received a phone call from a lady that suffers from RSD.

She saw some of my posts on the net and on various BBS's, and called to
tell me her story, and what I _could_ expect.

She claims to have originally had RSD in one foot, but now had it in her
entire body.

Heck, I don't want it to get into my knee, let alone the entire body!

 JG> Simply put...

 JG> Do I have a good chance of getting rid of the RSD if I have my leg
 JG> amputated ABOVE the area of pain and tissue damage?

AS> Simply put... I don't think so!

AS> Arthur

I am grateful for the concern by so many folks about my seeming "desire"
to lose a limb.

It isn't that I want amputation.  I don't want any of this.  However,
I have a limb which is permanently paralyzed, superficially numb, and
continues to suffer from periodic infections due to decreased circulation.

One of those infections was life-threatening and required emergency
surgery.

The limb is constantly in pain, most of the time barely tolerable, and it
continues to atrophy and degenerate.

On top of that, as I've said before, the RSD _is_ spreading.

I am quite willing to risk the loss of something that I cannot and
realistically do not expect to ever use again, in the hopes that
the spread of the RSD will indeed be stopped.  And, as an added
bonus, the pain may be less or non-existent afterward as well.

I am now discussing below-knee amputation with various physicians and
surgeons that have been treating me.  So far, none have refused to
consider it.  Most, understandably, stress that it's a serious and
radical step, and that I should make sure that I've exhausted all other
possibilities.  I appreciate that, and I follow their advice.

If I don't pursue amputation, I'll never know otherwise.

Arthur, you seem to be fairly knowledgeable about RSD.  May I ask you
what your profession is?

Regards,

Jim Graham

        -> ->Disclaimer: I do not speak for my company. <- <-
                          Neither do they speak for me.
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