How many people in the US are diagnosed each year with reflex
autonomic dystrophy (also called reflex sympathetic dystrophy)? It is
secondarily desirable to find out how many surgeries have been
performed in the US in the past 2-5 years on patients suffering this
condition? Please cite all sources, online or otherwise.

---

Clarification of Question by dgc-ga on 17 Mar 2003 06:23 PST

I am satisfied that angy-ga answered my question with the Comment
posted below, and wish to pay the $10 offered. (Angy-ga adequately
confirmed my own finding that the question probably doesn't have a
definitive answer. Angy-ga's related findings on the subject were very
useful and the time, effort, and results should be compensated.) I
don't know how to go about paying for this comment, so I am posting
this clarification in hopes the appropriate people will see it.

Thank you very much, dgc - one of the other researchers spotted your
kind comments and passed the message on to me.  Basically, why I do is
post the same comments found below in this answer box, and the payment
will be processed. Thank you again.

Here goes.

Hi, dgc-ga ! 
 
I have spent a some hours researching this interesting subject on-line
for you, without finding the specific statistics you ask for. There
are some probable reasons for the lack of details on numbers
diagnosed, due in part to the still controversial nature of the
diagnosis, and also the recent progressive re-naming of the syndrome.
 
 The American Pain Society has a 1998 article covering some of this by
Idamarie Scimeca Duffy at:
 
http://www.ampainsoc.org/pub/bulletin/nov98/advocacy.htm 
 
"Insofar as more than 6 million people have reflex sympathetic
dystrophy (RSD) syndrome, one questions why it takes so long to get an
accurate diagnosis. Could it be that medical professionals are not
familiar with the many faces of RSD? Or could it be that in its early
stage, RSD can look like many other injuries? In fact, RSD may not
actually present itself until days or weeks after an injury. Initially
the area of trauma looks and feels the way it should when it has been
traumatized. ....
 
To add to the confusion, RSD has been given more than 13 different
names. In 1994, the International Association for the Study of Pain
introduced new terminology for RSD—complex regional pain syndromes,
type I (RSD) and type II (causalgia). These terms will be phased in
over the next 8 years. Some medical professionals have embraced the
name change and others have not. Not many people with RSD are
comfortable with the name change, however. The reason is simple: It
has taken a long time to get recognition in the International
Classification of Diseases Code Book (9th ed.). The codes for RSD
began to appear in the code book only in October 1993. The name change
is already having an adverse effect on patients with RSD who are
applying for Social Security disability benefits."
 
 
A professional forum discussion illustrates some of the problems with
making a definitive diagnosis - and mentions a new "type III" -  at:
 
http://www.noigroup.com/ubb/Forum1/HTML/000094.html 
 
 
Lawyers Lenahan & Dempsey illustrate the same point at: 
 
http://www.lenahandempsey.com/injuries/rsd.htm 
 
"Reflex Sympathetic Dystrophy, or "RSD", is a sympathetic-mediated
pain syndrome that is diagnosed most often when no other diagnosis can
be made.
.... 
Unfortunately, due to the nature of the diagnosis, RSD is frequently
misdiagnosed by treating physicians. In many instances, the physician
is quick to diagnose an individual with RSD when there is another,
more common, physiological explanation for the individual's pain.
Similarly, since the diagnosis is unusual, some treating physicians
miss the diagnosis entirely and tell their patients the pain is only
in their head."
 
 
When it comes to actual statistics John A. Moriarty, M.D. and David E.
Drum, M.D. have a May 1990 scientific article at:
 
http://www.med.harvard.edu/JPNM/BoneTF/Case9/WriteUp9.html 
 
among other things they state: 
 
"RSDS often follows trauma or surgery. In 506 patients selected by
Sleinert from a large post-operative series, 25% followed operations
for crush injuries, 25% followed elective operations in the upper
extremities., e.g., carpal tunnel release, palmar fasciotomies, and
50% followed sprains, contusions and other operations. Symptoms begin
immediately after injury in 30% of patients; in the remainder they
usually start during the first week.
....RSDS may occur in many hospitalized stroke patients. Kozin reports
a figure of 14% and Tepperman 25%. "
 
 
Another professional article by Lawrence E Holder, MD, Clinical
Professor, Department of Radiology, University of Florida, Shands
Jacksonville can be found at:
 
http://www.emedicine.com/radio/topic596.htm 
 
He states: 
 
"The incidence of RSD following trauma is difficult to estimate, since
the literature is replete with studies in which clinical criteria for
the diagnosis of RSD vary dramatically, with many often equating
unexplained pain to RSD. For example, upper extremity RSD, as
understood and treated by hand surgeons, is described differently than
lower extremity RSD diagnosed by rheumatologists or hip RSD described
by obstetricians. Some authors suggest that 8-10% of patients with
fracture develop RSD, but in the author's experience, the frequency is
much lower. "
 
 
Among the support sites who aim their articles at the lay reader is
the Reflex Sympathetic Dystrophy Syndrome Association Of America
 
http://www.rsds.org/contents.htm 
 
Under common misconceptions they state: 
 
"FACT — It is not a rare disorder and may affect millions of people in
this country. This syndrome occurs after 1 to 2 % of various
fractures, after 2 to 5% of peripheral nerve injuries, and 7 to 35% of
prospective studies of Colles fracture. The diagnosis is often not
made early and some of the very mild cases may resolve with no
treatment and others may progress through the stages and become
chronic, and often debilitating." ...
 
But it is difficult to see where they have found their figures. they
also say:
 
".... There are many forms of treatment for RSD/CRPS. Treatment may
include medication, sympathetic nerve blocks, physical therapy,
psychological support, and possibly sympathectomy, or dorsal column
stimulator.
The physician directing the care of the patient should have a
treatment plan. In severe or long term cases, a Pain Clinic with a
coordinated plan may be helpful."
 
There is a well referenced Evidence Report  by Prabhav Tella,
September 2001 on the efficacy of Spinal Cord Stimulation in these
cases on their site at:
 
http://www.rsds.org/evidence_scs.htm 
 
There is a chart tabling the results of the various studies cited.
Part of the conclusion staes: "The limited information available from
the studies suggests that a substantial proportion of patients that
were subjected to a trial stimulation have had success and progressed
to permanent implantation of stimulatory electrodes."
 
 
Generally surgery is used when other means of blocking the chronic
pain have failed and includes Implantable devices such as a Spinal
Cord Stimulator or Drug Delivery Infusion Pump. Sympathectomy (cutting
or chemically blocking the affected nerves) is used in some cases.
Discussions generally indicate that surgical solutions to the problem
are losing favour with patients and doctors alike.
 
 
RSD Hope have a well organised support site  by the Orsini's and
Norman Hennessy
at: 
 
http://www.rsdhope.org/ShowPage.asp?PAGE_ID=3 
 
They say (their capitals) "ANYONE can get RSDS. There are millions of
Women, Men, and Children across the United States with this disease.
It affects women many more times than men, as high as four or five to
one; and affects all age groups from 3 to 103.(1)
1 - According to a National Survey done in 1998 by the National
RSDHope Group of 809 RSD Patients. "
 
Under RSD Facts there are a number of useful comments. About
sympathectomies they say (their capitals):
 
"SYMPATHECTOMIES ARE USUALLY A PERMANENT SHORT-TERM SOLUTION (THAT
USUALLY LEADS TO MORE SPREADING OF THE RSD AND MORE PAIN) TO A LONG
TERM PROBLEM ACCORDING TO A NATIONAL STUDY OF RSDS PATIENTS CONDUCTED
IN 1998. NEARLY 75% OF PATIENTS WHO HAVE A SYMPATHECTOMY REPORT AN
INCREASE AND/OR SPREAD IN THEIR RSD AFTER HAVING A SYMPATHECTOMY FOR A
YEAR OR MORE. PLEASE GET A SECOND, THIRD OR FORTH (sic) OPINION IF
YOUR DR. SAYS THIS IS THE ONLY SOLUTION TO YOUR RSDS PAIN. "
 
This certainly bears out the experince of my own mother-in-law. 
 
They also decribe a RHIZOTOMY as another surgical alternative. 
 
"Surgical destruction of nerve roots and also of nerves (such as those
around intervertebral joints) in order to relieve pain. Another
version of a sympathectomy, WHICH HAS EXTREMELY LIMITED POSITIVE
RESULTS but can have very damaging results "
 
About Spinal Column Stimulators they say: 
 
"Also called SCS or DCS, these devices are implanted under the skin
and send out electrical signals to "block" the signals the
RSD-affected nerves are sending to the brain. While some patients
report good pain reduction from these units, they do have some
problems. They are more effective early on, the leads can move
requiring further surgeries, removal of the units can lead to further
problems."
 
 
The National Institute of Neurological Disorders and Stroke have a
page at:
 
http://www.ninds.nih.gov/health_and_medical/disorders/reflex_sympathetic_dystrophy.htm
 
They summarise the same information and further comment: 
 
"In some cases, surgical or chemical sympathectomy -- interruption of
the affected portion of the sympathetic nervous system -- is necessary
to relieve pain. Surgical sympathectomy involves cutting the nerve or
nerves, destroying the pain almost instantly, but surgery may also
destroy other sensations as well."
 
 
Eric M. Phillips maintains the site of the International Reflex
Sympathetic Dystrophy Foundation at:
 
http://www.rsdinfo.com 
 
He considers all the surgical interventions as treatments to avoid but
does not explain why.
 
 
A large number of useful links can be found at a Project Links hub: 
 
http://www.projectlinks.org/rsd/ 
 
 
An online database of related articles is the Reflex Sympathetic
Dystrophy Syndrome DATABASE maintained by Rex Bickers at:
 
https://www.quickbase.com/db/68b9q3hq 
 
This can be searched (box top right). 
 
 
Medline lists a number of online articles at: 
 
http://www.nlm.nih.gov/medlineplus/reflexsympatheticdystrophy.html 
 
 
As I have been unable to find any statistics on the number of
surgeries performed with the resources available to me, I am reluctant
to post this as an answer but I hope you will find this of interest.
 
 
 
Search strategy: 
 
"Reflex Autonomic Dystrophy" provided no references although it is
referred to as a disease of the autonomic nervous system..
"Reflex Sympathetic Dystrophy" produced 608 links out of a possible
49,200 odd in google alone !
reflex sympathetic dystrophy statistics

Good job on a tough question.

Hi, dgc-ga !

I have spent a some hours researching this interesting subject on-line
for you, without finding the specific statistics you ask for. There
are some probable reasons for the lack of details on numbers
diagnosed, due in part to the still controversial nature of the
diagnosis, and also the recent progressive re-naming of the syndrome.

 The American Pain Society has a 1998 article covering some of this by
Idamarie Scimeca Duffy at:

http://www.ampainsoc.org/pub/bulletin/nov98/advocacy.htm

"Insofar as more than 6 million people have reflex sympathetic
dystrophy (RSD) syndrome, one questions why it takes so long to get an
accurate diagnosis. Could it be that medical professionals are not
familiar with the many faces of RSD? Or could it be that in its early
stage, RSD can look like many other injuries? In fact, RSD may not
actually present itself until days or weeks after an injury. Initially
the area of trauma looks and feels the way it should when it has been
traumatized. ....

To add to the confusion, RSD has been given more than 13 different
names. In 1994, the International Association for the Study of Pain
introduced new terminology for RSD—complex regional pain syndromes,
type I (RSD) and type II (causalgia). These terms will be phased in
over the next 8 years. Some medical professionals have embraced the
name change and others have not. Not many people with RSD are
comfortable with the name change, however. The reason is simple: It
has taken a long time to get recognition in the International
Classification of Diseases Code Book (9th ed.). The codes for RSD
began to appear in the code book only in October 1993. The name change
is already having an adverse effect on patients with RSD who are
applying for Social Security disability benefits."


A professional forum discussion illustrates some of the problems with
making a definitive diagnosis - and mentions a new "type III" -  at:

http://www.noigroup.com/ubb/Forum1/HTML/000094.html


Lawyers Lenahan & Dempsey illustrate the same point at:

http://www.lenahandempsey.com/injuries/rsd.htm

"Reflex Sympathetic Dystrophy, or "RSD", is a sympathetic-mediated
pain syndrome that is diagnosed most often when no other diagnosis can
be made.
....
Unfortunately, due to the nature of the diagnosis, RSD is frequently
misdiagnosed by treating physicians. In many instances, the physician
is quick to diagnose an individual with RSD when there is another,
more common, physiological explanation for the individual's pain.
Similarly, since the diagnosis is unusual, some treating physicians
miss the diagnosis entirely and tell their patients the pain is only
in their head."


When it comes to actual statistics John A. Moriarty, M.D. and David E.
Drum, M.D. have a May 1990 scientific article at:

http://www.med.harvard.edu/JPNM/BoneTF/Case9/WriteUp9.html

among other things they state:

"RSDS often follows trauma or surgery. In 506 patients selected by
Sleinert from a large post-operative series, 25% followed operations
for crush injuries, 25% followed elective operations in the upper
extremities., e.g., carpal tunnel release, palmar fasciotomies, and
50% followed sprains, contusions and other operations. Symptoms begin
immediately after injury in 30% of patients; in the remainder they
usually start during the first week.
....RSDS may occur in many hospitalized stroke patients. Kozin reports
a figure of 14% and Tepperman 25%. "


Another professional article by Lawrence E Holder, MD, Clinical
Professor, Department of Radiology, University of Florida, Shands
Jacksonville can be found at:

http://www.emedicine.com/radio/topic596.htm

He states:

"The incidence of RSD following trauma is difficult to estimate, since
the literature is replete with studies in which clinical criteria for
the diagnosis of RSD vary dramatically, with many often equating
unexplained pain to RSD. For example, upper extremity RSD, as
understood and treated by hand surgeons, is described differently than
lower extremity RSD diagnosed by rheumatologists or hip RSD described
by obstetricians. Some authors suggest that 8-10% of patients with
fracture develop RSD, but in the author's experience, the frequency is
much lower. "


Among the support sites who aim their articles at the lay reader is
the Reflex Sympathetic Dystrophy Syndrome Association Of America

http://www.rsds.org/contents.htm

Under common misconceptions they state:

"FACT — It is not a rare disorder and may affect millions of people in
this country. This syndrome occurs after 1 to 2 % of various
fractures, after 2 to 5% of peripheral nerve injuries, and 7 to 35% of
prospective studies of Colles fracture. The diagnosis is often not
made early and some of the very mild cases may resolve with no
treatment and others may progress through the stages and become
chronic, and often debilitating." ...

But it is difficult to see where they have found their figures. they
also say:

".... There are many forms of treatment for RSD/CRPS. Treatment may
include medication, sympathetic nerve blocks, physical therapy,
psychological support, and possibly sympathectomy, or dorsal column
stimulator.
The physician directing the care of the patient should have a
treatment plan. In severe or long term cases, a Pain Clinic with a
coordinated plan may be helpful."

There is a well referenced Evidence Report  by Prabhav Tella,
September 2001 on the efficacy of Spinal Cord Stimulation in these
cases on their site at:

http://www.rsds.org/evidence_scs.htm

There is a chart tabling the results of the various studies cited.
Part of the conclusion staes: "The limited information available from
the studies suggests that a substantial proportion of patients that
were subjected to a trial stimulation have had success and progressed
to permanent implantation of stimulatory electrodes."


Generally surgery is used when other means of blocking the chronic
pain have failed and includes Implantable devices such as a Spinal
Cord Stimulator or Drug Delivery Infusion Pump. Sympathectomy (cutting
or chemically blocking the affected nerves) is used in some cases.
Discussions generally indicate that surgical solutions to the problem
are losing favour with patients and doctors alike.


RSD Hope have a well organised support site  by the Orsini's and
Norman Hennessy
at:

http://www.rsdhope.org/ShowPage.asp?PAGE_ID=3

They say (their capitals) "ANYONE can get RSDS. There are millions of
Women, Men, and Children across the United States with this disease.
It affects women many more times than men, as high as four or five to
one; and affects all age groups from 3 to 103.(1)
1 - According to a National Survey done in 1998 by the National
RSDHope Group of 809 RSD Patients. "

Under RSD Facts there are a number of useful comments. About
sympathectomies they say (their capitals):

"SYMPATHECTOMIES ARE USUALLY A PERMANENT SHORT-TERM SOLUTION (THAT
USUALLY LEADS TO MORE SPREADING OF THE RSD AND MORE PAIN) TO A LONG
TERM PROBLEM ACCORDING TO A NATIONAL STUDY OF RSDS PATIENTS CONDUCTED
IN 1998. NEARLY 75% OF PATIENTS WHO HAVE A SYMPATHECTOMY REPORT AN
INCREASE AND/OR SPREAD IN THEIR RSD AFTER HAVING A SYMPATHECTOMY FOR A
YEAR OR MORE. PLEASE GET A SECOND, THIRD OR FORTH (sic) OPINION IF
YOUR DR. SAYS THIS IS THE ONLY SOLUTION TO YOUR RSDS PAIN. "

This certainly bears out the experince of my own mother-in-law.

They also decribe a RHIZOTOMY as another surgical alternative.

"Surgical destruction of nerve roots and also of nerves (such as those
around intervertebral joints) in order to relieve pain. Another
version of a sympathectomy, WHICH HAS EXTREMELY LIMITED POSITIVE
RESULTS but can have very damaging results "

About Spinal Column Stimulators they say:

"Also called SCS or DCS, these devices are implanted under the skin
and send out electrical signals to "block" the signals the
RSD-affected nerves are sending to the brain. While some patients
report good pain reduction from these units, they do have some
problems. They are more effective early on, the leads can move
requiring further surgeries, removal of the units can lead to further
problems."


The National Institute of Neurological Disorders and Stroke have a
page at:

http://www.ninds.nih.gov/health_and_medical/disorders/reflex_sympathetic_dystrophy.htm

They summarise the same information and further comment:

"In some cases, surgical or chemical sympathectomy -- interruption of
the affected portion of the sympathetic nervous system -- is necessary
to relieve pain. Surgical sympathectomy involves cutting the nerve or
nerves, destroying the pain almost instantly, but surgery may also
destroy other sensations as well."


Eric M. Phillips maintains the site of the International Reflex
Sympathetic Dystrophy Foundation at:

http://www.rsdinfo.com

He considers all the surgical interventions as treatments to avoid but
does not explain why.


A large number of useful links can be found at a Project Links hub:

http://www.projectlinks.org/rsd/


An online database of related articles is the Reflex Sympathetic
Dystrophy Syndrome DATABASE maintained by Rex Bickers at:

https://www.quickbase.com/db/68b9q3hq

This can be searched (box top right).


Medline lists a number of online articles at:

http://www.nlm.nih.gov/medlineplus/reflexsympatheticdystrophy.html


As I have been unable to find any statistics on the number of
surgeries performed with the resources available to me, I am reluctant
to post this as an answer but I hope you will find this of interest.



Search strategy:

"Reflex Autonomic Dystrophy" provided no references although it is
referred to as a disease of the autonomic nervous system..
"Reflex Sympathetic Dystrophy" produced 608 links out of a possible
49,200 odd in google alone !
reflex sympathetic dystrophy statistics