Why is diagnosing Thoracic Outlet Syndrome so difficult?

Join Arthur Jenkins, MD for a free, online education event that answers the question, "Why is diagnosing Thoracic Outlet Syndrome a challenging and difficult task for many clinicians?" A noted and compassionate TOS surgeon Dr. Jenkins covers a broad range of topics with an emphasis on the multiple challenges that physicians face when attempting to diagnose Thoracic Outlet Syndrome. Participant Q + A at the end of event. Join us.
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What are the symptoms of thoracic outlet syndrome?
Symptoms of thoracic outlet syndrome differ for each type of TOS
Doctors classify TOS into one of three types. Compression of different vital structures determines the type of TOS. Symptoms of thoracic outlet syndrome differ for each type of thoracic outlet syndrome.
To clarify, three vital structures pass through the thoracic outlet on each side:
Brachial plexus
Subclavian artery
Subclavian vein
Symptoms of thoracic outlet syndrome result from compression of the brachial plexus, subclavian artery, and subclavian vein
Anatomy of the thoracic outlet
In each thoracic outlet, compression or injury of each of these vital structures may occur. Therefore, different signs and symptoms of thoracic outlet syndrome result from compression of these different vital structures. Thus, patients can suffer one or more of the three types of TOS.
What are the symptoms of thoracic outlet syndrome for each type of TOS?
Five nerve roots arise from the spinal cord on each side of the neck. Then, these nerve roots travel out of the spine to the thoracic outlet. In each thoracic outlet, the roots form a complex branching network, called the brachial plexus. Compression of the brachial plexus or tension on the brachial plexus results in neurogenic TOS. Given the complexity of the structure of the brachial plexus, patients can suffer a broad range of symptoms.
Since compression or tension affects different parts of the brachial plexus in each patient, doctors typically see a complex clinical picture.
Patients may report the following symptoms of neurogenic TOS:
Pain in the neck, shoulder, chest, back (between the shoulder blades, shoulder, arm or hand, on one or both sides
Numbness, tingling, or coldness in the arms, hands, or fingers
Weakness of grip, or of the arms
Muscle wasting in the hands
Symptoms of neurogenic TOS depend on:
Which part of the brachial plexus is involved
What structures compress the plexus (bony vs. soft tissue)
How long compression or tension persists
Whether compression or tension is persistent or intermittent
The degree of compression or tension.
As a result, doctors often find the diagnosis of thoracic outlet syndrome quite challenging.
A single, large subclavian vein drains almost all of the blood from each arm. Compression of this vein can cause impaired venous drainage of the arm. When compression is severe or prolonged, it can cause damage to the inner vein wall. As a result, blood clot can form within the vein.
Patients may note the following symptoms of venous TOS:
Swelling and heaviness of one arm
Cyanosis (abnormal blue color) of the affected arm
Easy fatigue of the affected arm
New, shallow veins of the shoulder and chest
Shortness of breath, if blood clots travel to the lungs
Weakness, difficulty speaking, or other signs of stroke, in the rare event of blood clot traveling to the brain
SYMPTOMS OF VENOUS TOS
Back to Symptoms
A single, large subclavian artery provides most of the blood flow to each arm. Compression of this artery causes damage to the arterial wall. Damage to the inner wall can cause scar tissue and stenosis (narrowing of the artery). In contrast, damage to the full thickness of the wall can result in an aneurysm (focal ballooning of the artery). As a result of this aneurysm, a doctor may feel a pulsatile mass in the thoracic outlet. When arterial damage occurs, blood clots may form. These clots can break off and travel to distal arteries. As a result, blood flow stops, and gangrene of the affected area may develop.
Patients may experience:
Coldness of the arm
Loss of pulse in the affected arm
Profound weakness
Pale color of the arm
Numbness or tingling
A throbbing mass between the collar bone and the neck
Blockage of arterial blood flow is a surgical emergency. The patient should be diagnosed and treated urgently to prevent loss of function or loss of limb.

[@TylorLinzy]

I’m in the military and let me tell you how unfamiliar they are with TOS. I have been dealing with my pain and complications for 4 years now before I finally came across a vascular surgeon that was able to possibly diagnose me with NTOS. There is so little I am able to do as an engineer that they are considering discharging me. I have just started undergoing my first round of BoTox injections, however, I haven’t noticed any change. My surgeon is also only familiar with removing the first or cervical rib (which I do not have) so I absolutely don’t want to go the surgical route until we all know more. I feel like I’m doing more research on my condition than my doctors and that is very frustrating. Thank you so much for spreading awareness.

[@BustasGirl1]

Do you have pain in your scalenes?

[@mcgregory213]

@@BustasGirl1 I do what does it mean ? begging for help

[@coreythompson5213]

Hey man I recommend looking into your wellness nerd "is your pec minor a major problem"

[@jenniferhellenbrand7059]

Thank you for this. There is very little info out there. I was diagnosed with Paget Schrotter.

[@lauranowak3632]

This was the most informative video I have seen so far. I was recently diagnosed with TOS, but it had been suspected as a possible diagnosis since 1986 when I was diagnosed with carpal tunnel syndrome at the age of 16. I have had bilateral carpal tunnel surgery (right side revision once), bilateral cubital tunnel surgery, bilateral de Quervains surgery, bilateral index trigger finger surgery, and most recently C4-C7 cervical disc replacement with swan neck correction. I am dismayed to hear that my neck surgery will cause further difficulty in treating my TOS. My neck was starting to sway to the right, and I was told it was urgent that I have the neck surgery. I’ve also got cervical spondylosis w/o myelopathy or Radiculopathy, cervical Radiculopathy, unspecified inflammatory Spondylopathy cervical region, Dystonia, Occipital Neuralgia, unspecified inflammatory Spondylopathy lumbar region, radiculopathy lumbar region, spondylosis w/o myelopathy or radiculopathy lumbar region, spinal stenosis lumbar region, other disorders of peripheral nervous system, sacroiliitis not elsewhere specified, sacrococcygeal disorders not elsewhere classified, trochanteric bursitis left hip, patellar tilt syndrome in both knees, hips that twist to the left, unstable ankles, had approximately 13 abdominal surgeries, 2 meniscus repairs 1 per knee, and when the need arises I receive TAP injections for the abdominal pain, and lastly fibromyalgia. I started cortisone injections in my lumbar spine in 2013, moving to radio frequency ablation. Eventually I did the same for my neck, and added Botox injections for the Dystonia. I would never take Botox for vanity reasons, but they certainly help for Dystonia. Following my neck surgery, for which I was forced to resign my job over, the pain never quite dissipated. I have failed the ROOS test. I have been unable to go any further as I’m waiting upon disability at this time. Do you have any suggestions for me at this point? I have had several CT scans via the ER that show the discs surrounding those that have been replaced are disintegrating faster than expected. Thank you for your time, and possible interest. Laura Nowak

[@sz4179]

Dear Laura, I can only say how much I am sorry you have gone through so much and although the medical doctors have failed you, dont give up!

[@nancykennedy7206]

I forgot to mention that for months ago I had what I thought was a stroke everything went black and I couldn’t move my arm or my hand and then finally the light started coming into my eyes and I was able to move my fingers. I sat down thinking I was having a stroke and later I found out that TOS can mimic stroke. It’s so scary.

[@brockl1269]

Tos sounds so similar to what i've been going with but it's more on my backside and the nerve path going into my scapula although I did have some arm tingles and numbness at one point but no loss of strength.

[@ghostandbell2006]

Can't even describe what I'm going through....

[@US-bc3nt]

Same .very disabling.10 month struggling already.

[@remmyerickson4779]

This is what my cardiologist thinks I have, but he hasn't been much help other than that. The pain is so blinding when it acts up that I have to stop what I'm doing and hope I'm not dying. The first time it happened was just last year. The occurs at random times, but mostly happens when I'm hunched over and fades faster if I straighten up, which is difficult to do when I'm in that much pain. I'm hoping to get further information, but it doesn't sound like much can be done about it. I would just be happy to know. I notice that it occurs more often when I have Butalbatol or Tylenol.

[@tosmri]

@Remmy-Did you find a TOS specialist in your area? Its not so much their medical specialty, but their interest in TOS that is important.

[@BlueSky-qe4jn]

I had NCS and ROOS test negative, but when I work repetitively with my hands, my left hand is reddening, swelling and I feel it numb. My palm turns blotchy, and my arm is in pain. I have a lot of pain in both of my wrists. I insisted on hand swelling, when explained my symptoms, but the doc did not see it or very slightly, because it comes and goes. I guess my physio treats me for TOS and my trigger points.

[@kerleymotorcompanyinc.9062]

is it possible that tos could cause bradcardia or other abnormal heart rythms due to nerve signal interuptions from the compressed nerve bundle

[@nancykennedy7206]

Thank you for this. I’ve been suffering for about eight months with TOS. Do you know any specialist who thinks similarly to you and is qualified like you are in the Los Angeles area? Thank you

[@aprilmtucker]

Can TOS cause a purplish/ red color all over your arms & face? I've been having pain up & down the sides of my neck, shoulders, arms, armpit & my chest. I also have venous insufficiency and raynauds, atherosclerosis. I had to have a US last week & it said this "Multiphasic waveforms are identified within the left upper extremity at baseline, with the arm positioned at 90 degrees, and with the head turned towards the right and the left." & "There is a dampened waveform when patient's head is turned toward the left." I didn't hear you mention US at all in your presentation. I just had my CTA yesterday. I have Ossification of the posterior longitudinal ligament C5-C6 from bone morphogenic protein that was used off label for my ACDF. I had to have it done twice because the first time my surgeon put the screws into my spinal cord & caused myelomalacia. I am praying I don't have another problem. 🙏

[@kathleenwiggins6166]

Question to the doctor and speaker: Could TOS (left side) cause headaches on the left side of head?

[@AJSimonTalks]

How do I get help from you? I’m positive I either have VTOS or May Thurner. Not getting help here and I’m afraid I’m going to die

[@beatz3279]

1st and 2nd rib fusion is cause of my TOT and i have POTS and worsening autonmic dysfunction. Noone is of any help. Neuro and other specialists cant seem to fix it even though my arm i can hardly raise now amd have severe tingling pain and stuck poature on right side. Hard to breathe and when use right arm it sets off Blood pressure drops, heaviness in body and blackouts. No idea what to do

[@tosmri]

Hi, sorry to hear so much is going on. You can reach out to us for private health discussion at www.tosmri.com/thoracic-outlet-syndrome-education/contact-us/

[@beatz3279]

@@tosmri thankyou. Im in Australia though is their anyone in Victoria, Melbourne you would know of that is expertise in this area. Financially struggling and nothing so far helps and has been wasted money . Physio, accunpunutre, cupping, massage, etc all useless apart from some slight relief while they massage it

[@tosmri]

@@beatz3279 Unfortunately, I do not know somebody in Australia. There may be TOS providers in this country that can perform a virtual consult, and we can help you find them through private communications. Thanks!

[@beatz3279]

@@tosmri no worries thankyou. What is cost for a consult

[@tosmri]

@@beatz3279 You may not need a consult. But we don't discuss any personal details over the web or on YT. We are very careful to protect privacy, which we can do through our website and a secure health app we use. Sorry for the inconvenience.

[@lisahill6075]

Hi.. I’ve been suffering for about 6 years constant pain I have Eds I now am losing function in both arm pressure in left eye I have developed dupytrens contracture I have so much pain I’m cold all time, my neck burns and itches which I seem to getting one symptom and now more frequently with swelling in left side neck which is starting to go into right side neck.. I’ve also developed a small nodule at end collarbone I’m not sure if this is do with me breaking my collarbone when I was a kid symptom and swelling getting worse I’ve been rush in by ambulance a lot because massive swelling in left side neck that turns blue.. chest pain I’ve been passed around and even vascular surgeon touched it and said not vascular without test I’m suffering so much please could you give me advice my life is impacted badly I’m only 46 I suffer every day I feel no one is listening to me…

[@jadewindom68]

No one talks about Parsonage Turners Syndrome. Can you please spread awareness about PTS? RARE and no one can diagnose it except for spine surgeon like yourself. TOS smashes the brachial plexus the same way PTS does.

[@tosmri]

Thanks, and that's a good suggestion. Usually, the clinical presentation is different, so docs don't confuse the two often. Also, the routing 'brachial plexus' MRI performed by radiologists should be sufficient for Parsonage Turner syndrome, but not for thoracic outlet syndrome. Appreciate the input, and hope you are doing well.

[@immie52]

This pain is killing me the whole day i feel it and my docter let me go to hospital first mri for my nek, then again another mri nek shoulder they call it inpigment its not true beceause its tintling and dead feeling in my arm fingers i even let things fall out of my hand i did also EMG test.☹☹☹ now they want to give me nerve painkiller

[@aprilmtucker]

Did you have an Ultrasound at all? All these tests drive me crazy! I wish drs would actually use their instincts & brains instead of always relying on machines. Not everyone fits inside the same box!

[@cissem4025]

hows it going now ?