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I. Introduction
Statement of Purpose
The purpose of this study is to investigate the relationships that exist
among certain variables as they relate to the spread of the symptoms
of Reflex Sympathetic Dystrophy. The variables include type of causal
event, age at time of symptom onset, duration of time from symptom onset,
mitigating or aggravating medical procedures, and any additional injury.
Significance
A common complaint of sufferers of Reflex Sympathetic Dystrophy is that
they have been told that "it's all in your head". A physician, unable
to see an outward manifestation of injury, may be prone to ascribe the
pain to the mind rather than to the body of his or her Reflex Sympathetic
Dystrophy patient. It is far easier for a doctor to diagnose and treat
an obvious injury, such as a broken limb, than to make a difficult diagnosis
based primarily upon the fact that the patient complains of pain. Treating
the pain is treating Reflex Sympathetic Dystrophy. And sometimes treating
the pain does more harm than good. This research paper is intended to
contribute to the general body of knowledge concerning the timing, causation,
and conditions involved in the spread of the symptoms of Reflex Sympathetic
Dystrophy. Particular attention will be paid to the possibility that
there is a pattern to the events and circumstances that lead to a bilateral
symptom condition.
II. Literature Review
Definition and Description of Reflex Sympathetic Dystrophy
The first description of the condition now known as Reflex Sympathetic
Dystrophy is credited to Dr. Silas Weir Mitchell. He and his associates
performed several studies based on the treatment of Civil War soldiers
who had suffered gunshot wounds or nerve injuries. (Raja & Hendler,
1990). Dr. Mitchell defined the condition as causalgia, which he described
as a burning pain. (van der Laan & Goris, 1997).
In 1916, Dr. R. Leriche first described the pathophysiology of Reflex
Sympathetic Dystrophy. (van der Laan & Goris, 1997).
Dr. Leriche was the first physician to describe the connection between
an altered sympathetic nervous system and the pain known as causalgia.
(Raja & Hendler, 1990).
Dr. W. K. Livingston suggested that Reflex Sympathetic Dystrophy resulted
from a cycle in which the interaction of the sympathetic nervous system
and pain source develops into a chronic excitation of the spinal column.
(van der Laan & Goris, 1997).
Dr. Paul Sudeck proposed the idea that Reflex Sympathetic Dystrophy
was an exaggerated response to nerve damage or soft tissue injury. Reflex
Sympathetic Dystrophy is also known as Sudeck's Atrophy as a result
of his work in this specialty. (Veldman & Jacobs, 1994).
Dr. Sudeck documented the loss of bone mass in patients suffering from
Reflex Sympathetic Dystrophy. (Paice, 1995).
The International Association for the Study of Pain decided that causalgia
and Reflex Sympathetic Dystrophy differed enough to be split into two
disorders. In 1994, they renamed Reflex Sympathetic Dystrophy to Complex
Regional Pain Syndrome Type I and causalgia to Complex Regional Pain
Syndrome Type II. The difference between these two conditions is that
there is a definable nerve injury present in Complex Regional Pain Syndrome
Type II. (Simmons, 1998).
Reflex Sympathetic Dystrophy normally occurs as a result of surgery
or injury to a limb. Its symptoms can include unexplained diffuse pain,
changes in skin color, temperature differences between affected and
unaffected areas, limited range of motion, swelling, symptoms that appear
in areas not injured, decrease in bone density, and increased symptom
severity after exercise of the affected area. It is considered to be
a major cause of disability in that only twenty percent of Reflex Sympathetic
Dystrophy patients are able to resume all life activities. The most
common symptom of Reflex Sympathetic Dystrophy is pain. (Veldman, Reynen,
Arntz, & Goris, 1993).
There are three stages normally associated with Reflex Sympathetic Dystrophy.
The first stage is referred to as the acute stage. Pain is more than
what would be considered normal for the insult or injury. The affected
area is either too warm or too cold and is extremely sensitive to movement
and touch. Patients may avoid using an affected limb. The second stage
is known as the dystrophic stage. The pain becomes more severe and diffuse.
The patient is likely to suffer hair loss in the affected area and nails
become brittle and grooved. Muscle wasting and bone density loss begins.
Some patients experience a noticeable temperature drop and diminished
blood flow in the affected area or limb. Psychological and emotional
problems can occur due to the worsening of symptoms and lack of improvement.
The third stage is known as the atrophic stage. At this point, the pain
is widespread and intractable. Irreversible tissue change occurs during
this stage. Ligament and muscle problems may create a condition in which
the patient loses meaningful use of the limb. Hair loss in the affected
area becomes more pronounced and the skin often takes on a shiny or
smooth look. The patient is in constant pain and may experience additional
psychological and emotional difficulties. (Scarano & Shrager, 1994).
Diagnostics and Reflex Sympathetic Dystrophy
Many doctors have attempted to develop a methodology with which to make
a diagnosis of Reflex Sympathetic Dystrophy. Diagnostic considerations
have included thermography, bone scans, measures of blood flows, changes
in mobility, vasomotor changes, and even psychological testing. (Ochoa,
1997). Some doctors are hesitant to issue a diagnosis of Reflex Sympathetic
Dystrophy because of the diagnostic difficulties of associated with
a disease that can exhibit such varied and changing symptoms. Other
physicians apparently err in the other direction by deciding that any
patient complaining of symptoms similar to those of Reflex Sympathetic
Dystrophy must be suffering from this condition. (Olmos, 1998). The
only generally accepted diagnostic indication of Reflex Sympathetic
Dystrophy is a positive response to a sympathetic block. (Weiss, 1994).
Sympathetic blocks are usually accomplished via injection of a local
anesthetic to the stellate ganglion in the neck of the patient. (Raja
& Hendler, 1990).
Prognosis and Treatment for Reflex Sympathetic Dystrophy Patients
Patients may recover from Reflex Sympathetic Dystrophy. Spontaneous
recoveries are rare. Best results occur when there is an early diagnosis
and aggressive treatment. Sympathetic blocks and sympathectomies are
widely used to treat Reflex Sympathetic Dystrophy. (Raja & Hendler,
1990). Additional forms of treatment include physical therapy, psychotherapy,
biofeedback training, and use of various drugs including corticosteroids,
calcium channel blockers, anti-convulsants, opiods, anti-inflammatories,
and antidepressants. (Stanton-Hicks, Baron, Boas, Gordh, Harden, Hendler,
Koltzenburg, Raj, & Wilder, 1998). The long-term prognosis is not encouraging.
Some studies have indicated that as many as two-thirds of Reflex Sympathetic
Dystrophy patients experience the spread of symptoms into more than
one limb. (Schaffer, 1997). It is not uncommon for Reflex Sympathetic
Dystrophy to progress to a final or fourth stage in which the patient
may develop global symptoms including intractable hypertension, generalized
edema, skin lesions, and a weakened immune system. (Hooshmand, 1997).
III. RESEARCH QUESTION
Major Question:
What are the factors involved in the migration of symptoms experienced
by persons diagnosed as having the medical condition known as Reflex
Sympathetic Dystrophy?
Related Questions:
1. Is there a different pattern associated with age at symptom onset?
2. Was the migration of symptoms the result of an additional insult
or injury?
3. In what portion of the patient population have the symptoms spread
in a bilateral fashion?
4. Are the participants able to provide anecdotal information that provides
additional insight into causes, patterns, or other variables as they
relate to symptom migration?
IV. METHODOLOGY
Sample
This study targeted persons diagnosed as having the medical condition
known as Reflex Sympathetic Dystrophy. Limited time and resources dictated
the use of a convenience survey. Permission was obtained to use the
membership mailing list of the Reflex Sympathetic Dystrophy/Complex
Regional Pain Syndrome Association of North Texas. Additional addresses
were obtained from public records and private correspondence. A total
of ninety-eight (98) surveys were mailed to the persons on the combined
mailing list.
Instrumentation
This descriptive study was accomplished by use of a questionnaire. The
elements presented on the survey were developed from a review of the
literature and the expertise of the researcher. The questionnaire contained
ten questions. The first two questions concerned demographic considerations
of sex and age. Two questions were selection questions with an additional
area for other comment. One question requested the participant to select
an age range. Three questions requested a yes or no response. Two questions
were in a fill in the blank format.
A large comment section was included as the last item on the survey.
A copy of the questionnaire appears in Appendix B.
Study Design
The research question addressed by this study resulted from inquiries
made to the telephone response team of the Reflex Sympathetic Dystrophy/Complex
Regional Pain Syndrome Association of North Texas. A review of the available
literature indicated that this topic had not previously been researched
in depth. A thorough research of materials available already in the
possession of the researcher indicated a need for additional information.
A search of the periodicals database at the Plano Public Library provided
thirteen references to Reflex Sympathetic Dystrophy. These documents
were obtained and used to complete a review of the current literature
on the topic of choice.
A survey was designed so as to obtain responses concerning Reflex Sympathetic
Dystrophy symptom migration and the variables associated with this phenomenon.
The questionnaire was pretested and no problems were encountered. Ninety-eight
mailings were made to persons known to the researcher to have Reflex
Sympathetic Dystrophy and others listed on the member mailing list of
the Reflex Sympathetic Dystrophy/Complex Regional Pain Syndrome Association
of North Texas. The selection of these participants was based on the
fact that a convenience sampling was necessitated by a lack of the time
and resources that would have been required to obtain a more statistically
appropriate sample population. Mailings included the survey and a stamped,
self-addressed envelope. Thirty-nine questionnaires were returned and
processed. The conclusions presented in this research are the result
of the analysis of the twenty surveys that were completed and returned.
Data Analysis
Descriptive statistics, to include percentages, counts, and graphs,
will be used to analyze and describe the results of the survey used
in this research. Selected responses to open-ended questions and selected
comments will be reported as anecdotal information and will be included
appear in Appendix D of this document.
V. RESULTS
Ninety-eight questionnaires were mailed to potential participants. Ten
were returned as undeliverable. One envelope came back empty. One participant
returned the survey with a letter explaining that her diagnosis had
changed and she did not have Reflex Sympathetic Dystrophy. Thirty-nine
surveys were completed and returned for a response rate of 39.8%. Six
of the respondents were male and thirty-three were female. The ages
of the respondents are as follows: 5.13% were 15 to 19 years, 2.56%
were 20 to 24 years, 17.95% were 30 to 34 years, 7.69% were 35 to 39
years, 12.82% were 40 to 44 years, 28.21% were 45 to 49 years, 7.69%
were 50 to 54 years, 10.26% were 55 to 59 years, and 7.69% were over
59 years. 64.10% of the participants indicated that their Reflex Sympathetic
Dystrophy was the result of an injury, 23.08% indicated their condition
resulted from surgery, 10.26% indicated their condition resulted from
a combination of injury and surgery, and 2.56% indicated that something
other than injury or surgery caused their condition. The ages of the
participants at symptom onset are as follows: 5.13% were 14 years or
younger, 5.13% were 20 to 24 years, 15.38% were 25 to 29 years, 7.69%
were 30 to 34 years, 17.95% were 35 to 39 years, 15.38% were 40 to 44
years, 17.95% were 45 to 49 years, 10.26% were 50 to 54 years, 2.56%
were 55 to 59 years, and 2.56% were over 59 years. The average elapsed
time since initial diagnosis was 69.88 months. The average elapsed time
from symptom onset to diagnosis was 14.06 months. 82.05% of participants
reported that their Reflex Sympathetic Dystrophy symptoms had spread.
17.95% of participants reported no spreading of symptoms. Of those respondents
reporting symptom spread, 15.63% reported this to be a result of injury,
28.13% reported this to be a result of surgery, 21.88% reported this
to be a result of both injury and surgery, and 34.38% responded by selecting
"Other". Of the sixteen participants reporting symptom spread to be
the result of surgery, or a combination of injury and surgery, five
indicated that the surgery was related to Carpal Tunnel Syndrome. Of
the thirty-two participants that experienced symptom spread, 68.75%
of the participants reported bilateral symptom spread, 21.88% of participants
indicated no bilateral symptom spread, and 9.37% did not answer the
question. 69.23% of the participants provided additional information
in the comment section. 46.15% of the participants provided additional
information in the areas designated for explanation of an answer of
"Other". Graphical representations of analyzed response data is provided
in Appendix C.
CONCLUSION
Conclusions
The data collected by this research project has caused the researcher
to conclude that the symptoms of Reflex Sympathetic Dystrophy are likely
to spread as the result of additional injury or an invasive medical
procedure. Additionally, this research indicates that bilateral symptom
migration is common among Reflex Sympathetic Dystrophy patients. This
study indicates the need for additional professional inquiries into
the causes of symptom migration and possible treatments to delay, inhibit,
or otherwise mitigate this phenomenon.
Limitations
This study suffered from poor sampling technique. Far more significant
results could have been obtained by the proper and timely generation
of a more random and representative sample population. While no sample
is perfect, any improvement in the selection of potential participants
increases the generalizability of the research and improves the chances
for successful replication of the results.
APPENDIX A
Glossary of Terms
atrophy - wasting of a normally developed organ or tissue.
causalgia - a term used to describe a condition associated with
peripheral nerve injuries. This symptom is often described as a "burning
pain".
Complex Regional Pain Syndrome Type I - another name for Reflex
Sympathetic Dystrophy.
Complex Regional Pain Syndrome Type II - another name for causalgia.
dystrophy - defective nutrition.
intractable - resistant to normal treatment methods.
pathophysiology - the physiological changes that occur as a result
of disease.
shoulder-hand syndrome - another name for Reflex Sympathetic
Dystrophy.
stellate ganglion block - administration of a local anesthetic
to the group of nerve cells associated with the sympathetic nervous
system.
Sudeck's Atrophy - another name for Reflex Sympathetic Dystrophy.
Most commonly used in conjunction with the loss of bone density associated
with Reflex Sympathetic Dystrophy.
sympathectomy - the removal of a part of a sympathetic nerve or
a number of sympathetic ganglia.
thermography - a study of heat generated by the body.
vasomotor - having to do with changes to blood vessel constriction
or dilatation.
APPENDIX B
Copy of Survey
Survey of Reflex Sympathetic Dystrophy Patients
This survey is being conducted by a graduate student at Amber University.
It is an attempt to obtain data concerning Reflex Sympathetic Dystrophy.
Please take the time to complete the attached questionnaire. Your important
contribution to this project will be deeply appreciated. Your answers
will be strictly confidential.
Sex:
Male ____ Female ____
Age:
14 or Under_____
15 to 19_____
20 to 24_____
25 to 29_____
30 to 34_____
35 to 39_____
40 to 44_____
45 to 49_____
50 to 54_____
55 to 59_____
60 or Over_____
Do you believe your RSD to be the result of:
Injury:_____
Surgery:_____
Other:_____
If you checked 'Other', please explain ___________________________________________________________________________
___________________________________________________________________________
___________________________________________________________________________
Age at first RSD symptom:
14 or Under_____
15 to 19_____
20 to 24_____
25 to 29_____
30 to 34_____
35 to 39_____
40 to 44_____
45 to 49_____
50 to 54_____
55 to 59_____
60 or Over_____
How long have you had RSD symptoms:
Years:_____ Months: ______
How long after the onset of symptoms were you diagnosed as having RSD:
Years: _____Months: _____
Have your RSD symptoms spread:No_____Yes_____ If you answered 'No',
please skip to the COMMENT SECTION at the end of this document.
Do you believe your RSD symptoms SPREAD as the result of: Injury:_____
Surgery:_____ Other:_____ If you checked 'Surgery', was it for treatment
of Carpal Tunnel Syndrome: No____Yes_____
If you checked 'Other', please explain ____________________________________
___________________________________________________________________________
___________________________________________________________________________
Have your symptoms spread in a bilateral fashion, such as left foot
to right foot: No _____ Yes _____
COMMENT SECTION Use this area to make comments or observations that
might be helpful to this study: _______________________________________________________________________________
_______________________________________________________________________________
_______________________________________________________________________________
_______________________________________________________________________________
_______________________________________________________________________________
Anecdotal Information
Comments "Every time after remission the RSD (Reflex Sympathetic Dystrophy)
spreads to another part of my body."
"The RSD spread within a year and a half from affecting one upper extremity
& shoulder to both upper extremities & shoulders - no rational reason."
"RSD developed after CTR (Carpal Tunnel Release), has spread to all
extremities."
"RSD showed its ugly head on right wrist. I have it in my right upper
extremity, neck, jaw & right eye."
"My RSD began in my right hand & spread throughout my right arm. For
about the last month or so it has spread across the top of my back &
down left arm to elbow."
"At present I am full body & internal."
"Fell down steps - pain started. Had knee surgery - pain worsened and
spread to other leg."
BIBLIOGRAPHY
Hooshmand, H., MD. (1997). (CRPS, RSDS) Diagnosis and Therapy. 1997
Reflex Sympathetic Dystrophy Winter Medical Conference , 13.
Ochoa, J., MD. (1997, December). Reflex Sympathetic Dystrophy: Fact
and Fiction. American Family Physician, 56, 2182–2183.
Olmos, D. R. (1998, March 9). The Mystery of RSD. Los Angles Times,
S1.
Paice, E. (1995, June 24). Reflex Sympathetic Dystrophy. British Medical
journal, 310, 1645.
Raja, S. N., MD., & Hendler, N., MD. (1990). Sympathetically Maintained
Pain. Current Practice in Anesthesiology, 421.
Scarano, V. R., MD., & Sharger, D. S. (1994, May). The Overlooked Disease:
Reflex Sympathetic Dystrophy. Trial, 55–56.
Schaffer, B. (1997, February). RSD Treatment. CRSD Network of BC, 1,
7–8.
Simmons, J. (1998, November). SIMPL Treatment Offers Pain Patients Real
Hope. Hospital & Health News, 11, 19.
Stanton-Hicks, M., MD., Baron, R., MD., Boas, R., MD., Gordh, T., MD.,
Harden, N., MD., Hendler, N., MD., Koltzenburg, M., MD., Raj, P., MD.,
& Wilder, R., Md. (1998). Complex Regional Pain Syndromes: Guidelines
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van der Laan, L., MD., & Goris, R. J., MD. (1997, August). Reflex Sympathetic
Dystrophy. Hand Clinics, 13, 373.
Veldman, P. H., MD., & Jacobs, P. B., MD. (1994). Reflex Sympathetic
Dystrophy of the Head: Case Report and Discussion of Diagnostic Criteria.
The Journal of Trauma, 36(1), 120.
Veldman, P. H., MD., Reynen, H. M., MD., Arntz, I. E., MD., & Goris,
R. J., MD. (1993, October 23). Signs and Symptoms of Reflex Sympathetic
Dystrophy. Lancet, 342, 1012–1016.
Weiss, A. C., MD. (1994, July 23). Thermal Regulatory Testing for Pain
Dysfunction Syndromes. Lancet, 344, 209–210.
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