Post on 30-Dec-2016
Clinical Research
PresentedMeeting in San
No compet
Division oHopkins Medic
CorrespondSurgery, RossE-mail: klikes1
Diagnostic Accuracy of Physician andSelf-referred Patients for Thoracic OutletSyndrome Is Excellent
Kendall Likes, Danielle H. Rochlin, Quinn Salditch, Thadeus Dapash, Yen Baker,
Roxanne DeGuzman, Shalini Selvarajah, and Julie Ann Freischlag, Baltimore, Maryland
Background: The purpose of this study was to categorize patients referred to a specializedthoracic outlet syndrome (TOS) practice to determine the diagnostic accuracy of those whoare physician and self-referred.Methods: Demographic and clinical data on all patients who were referred for TOS between2006 and 2010 were retrospectively reviewed from a prospectively maintained institutional re-view boardeapproved database and patient records.Results: Between 2006 and 2010, 621 patients were referred for TOS (433 women and 188men; mean age 39 years [range 10e87]). Five hundred seventy-one patients (92%) were diag-nosed with TOS, with 421 (74%) neurogenic, 126 (22%) venous, and 24 (4%) arterial TOScases. Of the 525 physician referrals, 478 (91%) had TOS, and of the 93 self-referrals, 90(97%) had TOS. The 421 patients with neurogenic TOS (NTOS, 304 women and 117 men)had symptoms on average for 56 months (range 1e516). Two hundred seventy-one patients(64%) were initially treated with TOS-specific physical therapy (PT), and 100 (37%) improved.One hundred seventy-eight patients (42%) underwent a lidocaine block, and 145 patients(81%) had a positive block. Seventy-four patients (18%) underwent Botox injections 44 (60%)of which were positive and the average number of Botox injections was 1.3. One hundred fortypatients (33%) underwent transaxillary first rib resection and scalenectomy (FRRS), and 128patients (91%) improved. Of patients undergoing FRRS, 92 (66%) had a lidocaine block, 82(89%) of which were positive. Of patients with a positive lidocaine block, 74 (90%) improved afterFRRS. Of patients undergoing FRRS, 31 (22%) underwent Botox injections, 15 (48%) of whichwere positive. Of patients with a positive Botox block, 14 (93%) improved after FRRS. Averagelength of time between initial visit and operation was 6.4 months (range 2 weeks to 34 months),and average follow-up time was 13 months (range 1 week to 49 months).Conclusions: 1) Both referring physicians and patients are very accurate in their preliminarydiagnosis of TOS (neurogenic, venous, or arterial TOS). 2) In a specialized TOS practice,two-thirds of patients are sent to TOS-specific PT and one-third improve from this treatmentalone. 3) One-third of patients referred for NTOS eventually undergo FRRS with a 91% successrate.
at the Peripheral Vascular Surgery Society AnnualFrancisco, California on May 29, 2013.
ing interest declared.
f Vascular Surgery and Endovascular Therapy, Johnsal Institutions, Baltimore, MD.
ence to: Kendall Likes, BS, Johns Hopkins Department of759, 720 Rutland Avenue, Baltimore, MD 21205, USA;@jhmi.edu
Ann Vasc Surg 2014; -: 1–6http://dx.doi.org/10.1016/j.avsg.2013.12.011� 2014 Elsevier Inc. All rights reserved.
Manuscript received: November 13, 2013; manuscript accepted:
December 20, 2013; published online: ---.
1
2 Likes et al. Annals of Vascular Surgery
INTRODUCTION
Thoracic outlet syndrome (TOS) is a clinical disorder
that can manifest with neurogenic, venous, and/or
arterial symptoms. The most common subtype is
neurogenic TOS (NTOS, 95%)which often develops
in adults at their 20s to 40s, with a greater preva-
lence among women. These patients often present
with pain and numbness resulting from compres-
sion of the brachial plexus by the anterior scalene
muscle, the first rib, or fibrous bands.1 Often ana-
tomic compression is due to history of traumatic in-
juries or chronic and repetitive motion activities.2
Patients presenting with venous TOS (VTOS, 4%)
can present with subclavian vein thrombosis, most
frequently as an acute episode of unilateral arm
swelling and discoloration. These symptoms are
frequently associated with a history of vigorous
physical activity but can also be associated with an
underlying hypercoagulable disorder.3,4 Arterial
TOS (ATOS) is rare (1%), and patients often present
with acute or chronic ischemia of the arm. Patients
with ATOS have a high prevalence of bony abnor-
malities, such as cervical or rudimentary ribs.5
Treatment strategies for the various TOS subtypes
remain controversial and are often complex, espe-
cially in the neurogenic subtype. The diagnosis
and treatment can be particularly difficult, and as
more patients are being diagnosed as having TOS,
more are being referred for treatment options. Little
is known about the means by which high-volume
institutions, and more specifically specialized TOS
practices, manage a large number of referrals.
Thus, there is a clear need to better understand
the presentations, treatment algorithms, and out-
comes in the population of patients presenting
with symptoms of TOS. Our institution treats a large
volume of TOS patients, and thus, we were able to
examine a sizable cohort of patients referred for
TOS. The detailed analysis and characterization of
patients referred for TOS will help guide the course
of treatment for patients presenting with TOS. The
data and outcomes reports will help to identify can-
didates for further treatment, such as physical ther-
apy (PT), lidocaine and/or Botox blocks, and first rib
resection and scalenectomy (FRRS), all of which
have been shown to be effective treatment strategies
for TOS.
METHODS
Data Collection
A retrospective review of a prospectivelymaintained
databasewas performed. Patient datawere compiled
from January 1, 2006 to December 31, 2010. This
database has approval from the Johns Hopkins Insti-
tutional Review Board to follow the presentation,
treatment course, and outcome of patients present-
ing with symptoms of TOS at the Johns Hopkins
Medical Institutions. The database includes patient
demographic and clinical characteristics, such as
initial presentation, previous therapies, and treat-
ment course, in addition to patient outcomes, post-
operative complications, and patient follow-up.
This database is prospectively maintained by the
Johns Hopkins Division of Vascular Surgery and
Endovascular Therapy. Any additional information
was obtained from the electronic patient records.
Patient Selection Criteria
Patients were included in this study if they were
either self-referred or referred by a physician for
symptoms of TOS. Patients were diagnosed as hav-
ing VTOS and ATOS using duplex scanning and
the presence of symptoms consistent with compres-
sion, thrombosis, or ischemia. Patients were diag-
nosed as having NTOS if they had symptoms of
prolonged pain, weakness, numbness, or tingling
in the neck, shoulder, arm, and/or ulnar distribu-
tion; had a positive elevated arm stress test; had a
history of trauma or repetitive motion injury; and/
or if they experienced symptomatic relief and
decreased discomfort with a scalene block 3e5 hrs
after the procedure. Lidocaine injections were used
as a diagnostic measure to predict whether patients
would improve after an FRRS procedure. Botox in-
jections were used for painmanagement in older pa-
tients and in patients who needed to delay surgery.
Surgical Management
Patients referred to our institution with VTOS and
ATOS underwent preoperative duplex scanning. Pa-
tients with NTOS underwent 8 weeks or more of PT
before being considered for FRRS. TOS-specific PT
included exercises and maneuvers to stretch the
scalenemuscle, increase range ofmotion, strengthen
the back muscles and core, and massage the soft tis-
sue.2 Patients who did not see improvement after
this protocol underwent FRRS through a transaxil-
lary approach.
Patients with VTOS underwent venography at
2 weeks postoperatively to assess subclavian vein
patency. Those with >50% stenosis of the vein un-
derwent balloon dilatation and anticoagulation.
Those with chronic occlusion received anticoagula-
tion therapy. Those with a patent subclavian vein
(<50% stenosis) received no further interventions.
Vol. -, No. -, - 2014 Determination of diagnostic accuracy for TOS 3
Follow-up included clinic visits at 1, 3, and
6months and 1 and 2 years postoperatively. In addi-
tion to an assessment of symptoms in all patients,
follow-up testing for patients with vascular symp-
toms included duplex scans at postoperative visits
to assess vessel patency and flow velocities.
Fig. 1. Life table analysis displaying rate of improve-
ment, as defined by freedom from symptoms, after
FRRS for patients with at least 12-month follow-up
with neurogenic thoracic outlet syndrome.
RESULTS
Six hundred twenty-one patients were referred for
TOS between January 2006 and December 2010.
There were 433 women and 188 men with an
average age of 39 years (range 10e87 years). Of
these 621 patients, 571 patients (92%) were diag-
nosed with TOS. Of these, 421 (74%) were diag-
nosed with NTOS, 126 (22%) with VTOS, and 24
(4%) with ATOS. Of the 525 physician referrals,
478 (91%) were diagnosed with TOS, and of the
93 self-referrals, 90 (97%) were diagnosed with
TOS during their assessment.
Neurogenic TOS
The 421 patients who had NTOS included 304
women (72%) and 117 men (28%) with an average
age of 40 years (range 10e82 years). Of the neuro-
genic patients, 389 (92%) were referred by their
physician and the other 32 (8%) were self-referred.
These patients experienced neurogenic symptoms
for an average of 56 months (range 1e516 months)
before presentation. Of the 421 patients with NTOS,
140 (33%) underwent transaxillary FRRS, and 128
(91%) improved with surgery. The average length
of time between presentation to clinic and FRRS
operation was 6.4 months (range 0.5e24 months).
Of patients undergoing FRRS, 10 (7%) were found
to have a prominent cervical rib that was also
removed during the operation. Neurogenic patients
were followed for an average of 16.3 months after
FRRS (median 13 months, range 0.25e87 months;
life table analysis, Fig. 1).
Of the neurogenic patients, 271 (64%) were first
sent to TOS-specific PT, and of these, 100 (37%)
improved fromPT alone. Thosewho did not improve
after PT were considered for surgery. Of this patient
subset, 67 (39%) underwent transaxillary FRRS and
65 (97%) improved after the operation.
Of patients presenting with NTOS, 178 (42%) un-
derwent a lidocaine block. Of patients who under-
went a lidocaine block, 145 (81%) had a positive
block, 27 (15%) had a negative block, and the
remaining patients had an unknown outcome. Of
patients undergoing surgical intervention for NTOS,
92 (66%) had undergone a lidocaine block before
surgery, 82 (89%) of which exhibited a positive
block. Of patients undergoing transaxillary FRRS
who had a positive lidocaine block, 74 (90%)
improved after the operation. Of the 27 patients
with a negative block result, 7 (26%) underwent
transaxillary FRRS and 6 (86%) of them improved
after surgery.
Of the neurogenic patients, 74 (18%) underwent
Botox injections. Of these, 44 patients (60%) had a
positive block, 19 patients (26%) had a negative
block, and the outcomes of the 11 remaining pa-
tients’ blocks were unknown. The average number
of Botox injections administered was 1.3, and suc-
cessive injections were given 3 months apart. Of pa-
tients undergoing transaxillary FRRS, 31 (22%) had
undergone Botox injectons before surgery. Of these,
15 patients (48%) exhibited a positive Botox block
before surgery. Of patients with a positive Botox
block, 14 (93%) improved after surgical interven-
tion. Of the 19 patients with a negative Botox block,
11 (58%) underwent transaxillary FRRS, and 9
(82%) of them improved after the operation.
Venous TOS
The 126 patients who were diagnosed with VTOS
included 77 women (61%) and 49 men (39%) with
an average age of 33 years (range 15e65 years). Of
the venous patients, 113 (90%) were referred by a
physician, whereas the other 13 (10%) were self-
referred. These patients experienced vascular symp-
tomsanaverageof22months (range1e324months).
Of patients diagnosed with VTOS, 13 (10%) were
found to carry an underlying hypercoagulable disor-
der. The average length of time between the initial
Fig. 2. Life table analysis displaying rate of improve-
ment, as defined by freedom from symptoms, after
FRRS for patients with at least 12-month follow-up
with venous thoracic outlet syndrome.
Fig. 3. Life table analysis displaying rate of improve-
ment, as defined by freedom from symptoms, after
FRRS for patients with at least 12-month follow-up
with arterial thoracic outlet syndrome.
4 Likes et al. Annals of Vascular Surgery
presentation to clinic and surgery was 1.8 months
(range 1 day to 12 months). Ultimately, 89 patients
(71%) found to have VTOS were operated on, and
77 (87%) of these improved in the postoperative
period. Of patients undergoing FRRS to relieve
compression of the subclavian vein, only 1 had a
prominent cervical rib that was also removed during
the operation. Venous patients were followed for an
average of 19.1 months (median 14 months, range
0.5e70 months; life table analysis, Fig. 2).
Arterial TOS
The 24 patients who were diagnosed with ATOS
included 15 women (63%) and 9 men (37%)
with an average age of 29 years (range 12e54 years). Of the arterial patients, 22 (92%) were
referred by a physician, whereas the other 2 (8%)
were self-referred. These patients experienced
symptoms for an average of 31.7 months (range
1e144 months). Of the patients with ATOS, 18
(75%) underwent transaxillary FRRS to relieve
arterial compression, and 16 (89%) improved in
the postoperative period. Of patients undergoing
FRRS to relieve compression of the subclavian ar-
tery, 7 (39%) had a prominent cervical rib that
was also removed during the operation. The
average length of time between their initial clinic
visit and date of surgery was 2.3 months (4 days
to 10 months). Arterial patients were followed for
an average of 17.3 months (median 12 months,
range 1e71 months; life table analysis, Fig. 3).
One patient diagnosed with ATOS underwent
FRRS but was lost to follow-up.
Other Diagnosis than TOS
There were 50 patients presented to clinic with TOS-
like symptoms who were not diagnosed with TOS.
There were 33 women and 17men, with an average
age of 47 years (range 14e87). Of these, 47 (94%)
were referred by a physician and 3 (6%) were self-
referred. These patients were found to carry a num-
ber of different diagnoses, including 15 patients
(30%) with other neck or shoulder problems, 13 pa-
tients (26%) with other vascular issues such as arte-
rial occlusive disease or arteritis, 6 patients (12%)
with other pain syndromes, 5 patients (10%) with
musculoskeletal injury or pain, 3 patients (6%)
with other nerve issues, and 3 patients (6%) with
neurologic issues. These patients were referred to
other specialists (orthopedic, neurosurgery, neurol-
ogist, or pain management) to create an appropriate
treatment plan for their discomfort and pain.
DISCUSSION
Little is known about the spectrum of TOS referrals
encountered and managed by a high-volume insti-
tution and more specifically by a specialized TOS
practice. We examined a large cohort of patients
referred to our practice for TOS to determine trends
in clinical diagnoses, treatment patterns, and thera-
peutic outcomes. The detailed analysis and charac-
terization of patients referred for TOS and the
outcomes reported in our study serve to help iden-
tify candidates for further management and guide
the course of treatment for patients presenting
with symptoms of TOS.
Vol. -, No. -, - 2014 Determination of diagnostic accuracy for TOS 5
Our analysis reveals a number of patterns con-
cerning patient presentation and referral. On
average, patients with NTOS were older than pa-
tients with VTOS (P� 0.05) or ATOS (P� 0.05). Pa-
tients with NTOS were on average 40 years old as
compared with patients with VTOS, who were on
average 33 years old, and patients with ATOS,
who were 29 years old on average. In addition, pa-
tients with NTOS have a longer duration of symp-
toms than those with either ATOS (P � 0.05) or
VTOS (P � 0.05) and fewer have surgery.
In our patient population, just 33% of patients
diagnosed with NTOS underwent transaxillary
FRRS, whereas a greater percentage of patients
with VTOS and ATOS underwent surgical interven-
tion to relieve vascular compression 71% (P� 0.05)
and 75% (P � 0.05), respectively. For many pa-
tients, neurogenic symptoms can be relieved with
more conservative treatments such as TOS-specific
PT2 and/or scalene muscle blocks.6 In our patient
population, neurogenic patients had symptoms for
an average of 56 months before presentation,
whereas venous and arterial patients had symptoms
for an average of 22 and 31.7 months, respectively.
Prior studies have suggested that duration of symp-
toms is associatedwith a poorer outcome.7,8 Howev-
er, our study indicates that surgical management
yields excellent results in all patients with all sub-
types of TOS.
We find that patients with vascular symptoms are
treated more aggressively than patients with neuro-
genic symptoms. On average, patients presenting
with VTOS and ATOS waited a shorter amount of
time before surgical intervention, 1.8 months
(P � 0.05) and 2.3 months, (P � 0.05) respectively,
as compared with patients with NTOS, who waited
for an average of 6.4 month filled with further PT
and scalene blocks before undergoing FRRS. All pa-
tients presentingwith venous symptoms underwent
our standard protocol of transaxillary FRRS and
postoperative venography at 2 weeks with possible
balloon dilatation and/or anticoagulation therapy,
which has been shown to rapidly resolve symptoms
so that patients can quickly return to baseline activ-
ity levels. Patients with arterial symptoms should
also be treated aggressively to prevent complications
such as axillosubclavian aneurysms and emboliza-
tion from subsequently developing. Patients with
NTOS should initially be treated conservatively
with PT before undergoing FRRS for symptom relief
because, in a specialized TOS practice, two-thirds of
patients are sent to TOS-specific PT, and of those,
one-third improve from PT alone.9
We emphasize the importance of easy access to
office staff by phone or e-mail for the purpose of
referral. In our practice, the patient coordinator is
a specialized informed professional working with
and under the direction of the physician. Although
the physician is primarily responsible, the coordi-
nator supports, facilitates, and manages daily pa-
tient interaction and plays a critical role in the
conduct of the practice. The coordinator is knowl-
edgeable and seeks to aid patients who contact us
by phone or e-mail to discuss symptomatology and
discern treatable candidates from individuals un-
likely to harbor a diagnosis of TOS. The individual
helps to prevent poor outcomes by helping to iden-
tify factors predictive of success and failure with our
TOS treatments and protocols. In our practice, we
also stress the importance of obtaining and using pa-
tient records ahead of time to direct treatable indi-
viduals to our practice. By performing these duties,
the coordinator works with the physician, depart-
ment, and institution to support the many facets of
the practice.
We find that surgical management in patients
with all 3 forms of TOS yields excellent outcomes
and a quick return to baseline activity levels. This
compares favorably to previously recorded out-
comes of surgical intervention for patients with
various types of TOS.8,10e13 The surgery success
rates are comparable among groups. In our patient
population, 91% of neurogenic patients, 87% of
venous patients, and 89% of arterial patients
improved after transaxillary FRRS. We follow all 3
groups of patients for about the same amount of
time; in this study, neurogenic patients were fol-
lowed postoperatively for an average of 13 months,
venous patients were followed postoperatively for
an average of 16 months, and arterial patients
were followed postoperatively for an average of
13.2 months. We have found that it takes patients
w1 year to return to baseline activity after FRRS.9,10
Both referring physicians and patients are very
accurate in their preliminary diagnosis of TOS.
We found that 92% of physician referrals were
confirmed to have TOS, suggesting that our medi-
cal and surgical colleagues are successfully making
the appropriate diagnoses and referrals. Similarly,
the even higher rate of accurate patient self-
referrals (P < 0.05) suggests that patients are
educated about TOS. It is our belief that this is
occurring through social media and/or other
Internet-based sources. In our practice, we support
the use of Web-based social media as a diagnostic
aid. New media tools are reengineering the way
patients obtain information, and we have found
that social media, such as YouTube,14 can be
used as an informative and educational platform
to empower patients.
6 Likes et al. Annals of Vascular Surgery
CONCLUSIONS
Both referring physicians and patients are accurate
in making the diagnosis of NTOS, VTOS, and
ATOS. Utilization ofmedical literature, socialmedia,
and electronic communication may play a role in
informing patients and physicians about TOS. A
knowledgeable intake staff member is critical to
screening patients and organizing their records
before their visit. Excellent outcomes are seen in pa-
tients with NTOS, VTOS, and ATOS using both con-
servative treatments and surgical intervention.
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