Thoracic Outlet Syndrome

Disclaimer: This is not medical advice. This is for informational purposes only and any issues you have should be dealt with by contacting a medical professional.

Courtesy: Jordan Wasson

My story:

I went for a casual swim with no previous symptoms whatsoever. About 20 minutes into the swim, my right arm felt super fatigued and I could barely finish a 100…it was swollen to about 3 times its normal size! Since I had previously learned about thoracic outlet syndrome (TOS) in one of my undergraduate classes, I recognized what was potentially going on and hopped out immediately. My coach, who also had TOS 15 years ago, immediately thought of TOS and we concluded that I should go get checked out ASAP. Just a few hours later in the ER, a deep vein thrombosis was found with an ultrasound and I was dismissed with blood thinners. The next few days were chaotic as I was trying to figure out what the heck was going on and what I needed to do next. After learning that it was safe to fly, I went back home to CO where I felt that there was better medical care. After all, the Texas system was pretty chaotic at the time because of COVID. I had a clot removal procedure done 10 days after finding the blood clot and venous TOS was confirmed during a Venogram.

It took about 2 weeks for my arm to stop hurting…the blood thinners didn’t seem to help the healing process! A follow up ultrasound showed that my vein had healed up nicely and that the blood clot was gone! Now that the immediate problem was solved, it was time to solve the root cause. While on blood thinners, I was able to get back to a few normal activities while always keeping my arm down at my side. Sure I wasn’t able to swim, but being back in the water kicking felt like therapy to me.

I exhausted many non-surgical treatment options, but it was clear that I would need the TOS surgery considering my health and long-term goals: I didn’t want to stay on blood thinners for life, I didn’t want to reclot, I wanted to return to a normal lifestyle, and odds were in my favor for a smooth recovery from the surgery. I consulted 4 surgeons and was eventually able to get in the door of Dr. Lum’s office at Johns Hopkins after switching my insurance. About 2 months after the initial blood clot, I flew to Baltimore and had a consultation with Dr. Lum. Speaking confidently, he said that I was a great candidate for the surgery because of the risk-reward ratio and that I would be just fine. With just a little bit of time to process things, I headed into surgery just 2 days later.

My experience at Johns Hopkins was top tier…they handled my anesthesia concerns well, I had zero complications, I was dismissed 24 hours later, and I flew back home 48 hours post-operation. I’ll admit the pain was pretty terrible for the first 4 days or so…speed bumps in the car and coughing were the worst! Getting in and out of bed was comical as well. Despite the pain, I was able to avoid the 7 medications they gave me after leaving the hospital and take Tylenol… I’d say that’s a major win!

I hopped on numerous modalities to help accelerate the healing process (cold laser, photobiomodulation, light massage, heat, etc.) and started physical therapy after 2 weeks. I’m currently about three-quarters of the way through my PT program and I’m very pleased with my recovery so far! I’m able to walk, lift on my legs a bit, lift with my left arm only, do some elliptical and recumbent bike, and I’m waiting for my incision to close so that I can get back into the water! What’s my recovery schedule like? I have about 3 months of PT, stop blood thinners after 3 months, and should be able to return to normal activities that any 24-year-old guy should be able to do by 6 months. I’m looking forward to the day I’ll be able to swim a 100 again! Who knows…maybe I’ll even be able to swim an event or two at a meet next spring sometime? I am still amazed at how great my experience at Johns Hopkins was and how well my recovery is going…I’d recommend Dr. Lum and his team again in a heartbeat!

So…what is Thoracic Outlet Syndrome anyways?

TOS is a condition where the nerves, veins, and/or arteries are compressed in the area under the collarbone. TOS can be divided into 3 types:

1. Neurogenic
2. Arterial
3. Venous

Each type of TOS originates from the same problem (compression), but the presentation of and solution to each type is distinct and can be highly individual. Here are some things that may contribute to the development of TOS:

• Repeated overhead motions
• Injury
• Bodybuilding or weight gain
• Neck tumors

Although TOS is extremely rare, swimmers fit the textbook description for people who are at an increased risk for TOS complications: young overhead sport athletes 🙁 TOS normally occurs on the dominant hand side, but there is about a 10% chance of having TOS on both sides.

Neurogenic: 

Neurogenic TOS makes up the majority of TOS cases (90%) and it is often difficult to acquire the diagnosis. Neurogenic TOS can be caused by the impingement of the brachial plexus as a result of anatomical variations and/or injury to the area. Typically, patients will experience neural signs and symptoms including pain, tingling, and numbness in the shoulder, arm, and hand. These symptoms are likely to be exacerbated by overhead motions…so swimming.

There are many treatment options when it comes to neurogenic TOS. Typically, it is advised to exhaust all non-surgical options before jumping straight to surgery. Treatments include:

• Chiropractic adjustments: manipulation of the 1st rib and clavicle
• Physical therapy
• Injection of the scalene or pectoralis muscle to prevent muscle spasms
• TOS surgery/decompression which may include any combination of the following: cervical rib, 1st rib, middle scalene, neurolysis, and pectoralis minor.

The bottom line is that treatments will vary individually. Some patients may find success with just physical therapy, while others may need surgery to resolve the problem.

Arterial 

Arterial is the most rare type of TOS (2-5% of cases) and is caused by compression of the subclavian artery in the scalene triangle. This compression typically results in occlusions, aneurysms, arterial lesions, and/or blood clot formation. Arterial TOS is most likely to occur in patients with a cervical rib compared to those who do not. Arterial TOS may be asymptomatic or symptomatic. Symptoms include sudden hand pain or weakness, numbness and tingling in the hand, cold or pale hands, wounds that heal very slowly, and chronic fatigue in the hand.

Arterial TOS is diagnosed using Duplex ultrasound and other imaging studies.

Treatment includes:

• Patients are immediately put on blood thinners
• Surgical removal of the blood clot as soon as possible
• TOS surgery/decompression
• Reconstruction of the subclavian artery during the procedure if needed

Venous

Venous TOS is very rare (10% of cases) and has several names that all mean the same thing: Paget-Schroetter Syndrome and effort thrombosis for example. It is a result of subclavian and/or axillary vein compression between the clavicle and 1st rib. As time goes on, scar tissue develops, fibrosis occurs, vein narrowing arises, and an occlusion occurs as a result of a deep vein thrombosis (DVT). Unfortunately, the initial phase includes no symptoms at all, so the diagnosis almost always goes under the radar until more severe symptoms occur. Venous TOS symptoms include pain and heaviness in the arm, abrupt swelling of the arm, or discoloration of the arm. Venous TOS requires immediate attention because of complications including pulmonary embolism and long-term damage to the tissues in the arm.

DVT can be diagnosed using Duplex ultrasound, venogram, or other imaging studies.

Treatment includes:

• Patients are immediately put on blood thinners
• Surgical removal of the blood clot (recommended within 2 weeks)
• Conservative treatment: blood thinners for life, arm elevation, arm compression, and major activity restrictions. There is limited data showing how successful this method is in terms of reclotting. Dr. Lum said that reclotting happens roughly 30-40% of the time.
• Recommended treatment: surgical removal of the 1st rib and scalene muscle considering that the issue is very mechanical. TOS surgery is especially advised for patients who want to nearly eliminate the risk of reclotting and maximize their chances of returning to a normal, active lifestyle without blood thinners.

TOS Surgery

Overall, it is a specialized surgery that you wouldn’t want just any random surgeon to take on. Sure, any surgeon could do it, but considering complications, success rates, redo surgeries, etc.. I’d recommend finding an expert. After consulting numerous surgeons who specialize in TOS surgery, here are my recommendations:

1. Dr. Ying Wei Lum (Johns Hopkins)
2. Dr. Stephen Annest (Denver, CO)
3. Dr. Hugh Gelabert (UCLA)

I had to put Dr. Lum at the top of the list because I am biased…he did such an amazing job with me! These surgeons are listed for the following reasons:

• Minimal time in the hospital (1 day. Dr. Lum was actually releasing patients from the hospital on the same day as the procedure when COVID was bad last winter)
• Short procedure times (45-120 minutes)
• Minimally invasive (I had 1 incision under the armpit instead of 2 around the clavicle)
• Lot’s of experience
• Low complication rates (blood transfusion, pleural tears, T1 nerve irritation, pneumothorax, etc.)

Links that may be helpful:

1. https://www.toseducation.org
2. https://tos.wustl.edu/what-is-tos/
3. https://www.hopkinsmedicine.org/profiles/details/ying-wei-lum
4. https://www.hopkinsmedicine.org/health/conditions-and-diseases/thoracic-outlet-syndrome
5. Check out some of the support groups on Facebook and Reddit (r/thoracicoutlet) for more firsthand accounts and experiences.

Please feel free to contact me with any questions! I understand that navigating the entire process can be difficult, so I am happy to help in any way possible!

– Jordan Wasson

• Venous TOS patient | Graduate student at UT Austin in Kinesiology | Longhorn Aquatics | NSCA Certified Strength and Conditioning Specialist
• [email protected]