My health story

I decided to set up this page as a place to document my health journey. The main purpose will be to provide information for any medical professionals that I work with in the future who need to be brought up to speed on my situation. For that reason, I won't include information that a medical professional would likely know.

For now, friends and family can utilize the excellent TOS Outreach website to learn more about this condition.

Overview

In May of 2020 I came down with a severe case of bilateral thoracic outlet syndrome (TOS). It was misdiagnosed a number of times but at the very end of 2020 I finally understood what I was dealing with. In 2021 I had two first rib resection (FRRS) surgeries, once on each side. Following the second surgery on the right side, I had a lot of new nerve pain in my right arm and hand. Over several months some of the most acute new symptoms subsided, but the original symptoms remained. All told, I've gotten worse since the original onset of the condition. Painful flareups that last for 2-3 weeks are very common. Many activities could lead to such a flareup: sleeping wrong, standing too long, sitting in a chair without a very specific kind of armrest, talking at length, or doing anything with my hands or arms. The chronic pain I experience is debilitating.

Timeline

Now I will step through the timeline of events in detail, summarizing different periods of time and dwelling on moments where there was a significant change in my condition.

Leading up to May 2020

I will try to summarize concisely the relevant bits of my life up to May 2020, the onset of TOS. I will describe some hobbies, and then the leading indicators of TOS that I noticed during this period.

Relevant hobbies

In my childhood up to the onset of TOS, I spent a lot of time rock climbing, playing guitar, using a computer, and fire spinning.

From high school onwards, I was rock climbing very often. I competed on a team which involved training long hours during high school. There were stretches of weeks where I was at the climbing gym every day. I have climbed outdoors many times, and have made many trips for the express purpose of rock climbing outdoors.

Hopefully it's becoming clear just how much time I've spent rock climbing! I think what's most important to note is that I spent many hours bouldering overhanging routes. Bouldering is a type of climbing that is shorter and more intense then other styles of climbing. The end result is that I spent a lot of time with my full body weight on both arms, with my arms fully extended above my head. Since high school, I have also been an avid fan of doing pullups, and would crank out a lot of them without properly warming up (whoops). My personal best was 42!

Playing guitar and using the computer: I spent a lot of time doing these things with (probably) poor posture from an early age. Both involve lots of repeated hand movements for long periods of time.

From 2014 onwards I also began fire spinning, and started doing so very often. Fire spinning (or more specifically spinning poi, the particular prop I use) involves moving one's arms around one's body for long periods of time. It can be a serious shoulder workout! Below is a video of some relatively calm spinning.

Leading indicators of TOS

I always seemed to have sensitive ulnar nerves. I would often hit my funny bone and feel a lot of pain. One time this caused me to pass out for a brief period, although dehydration and being physically exhausted probably contributed to that episode.

I have always had poor circulation in my arms. My hands would often be very cold to the touch, and appear pretty pale.

In the six months leading up to May 2020, I started experiencing numbness in my forearms and pinky and ring fingers while doing certain activities, most notably playing Nintendo Switch (a handheld gaming device) and using my home computer setup, which had an unergonomic keyboard and mouse setup. Sometimes I would stop the activity, but other times I would just continue despite the numbness. It never progressed to pain during this time.

Around May 15th 2020, I injured my right shoulder's rotator cuff while servicing my at-home rock climbing wall. I was hanging off of the wall with one hand and turning a wrench with the right hand when I felt a pain in my shoulder. I stopped what I was doing, but over the next couple of weeks until the clear onset of TOS, I continued to type on my computer, which felt a bit funny. I can remember during this time as I was working long hours feeling a bit uncomfortable, and believe I might have been hunching my shoulders slightly differently to manage that feeling. I could not raise my right arm above my shoulder, and found myself supporting my right arm with my left arm occasionally.

May 2020 - December 2020: Onset of TOS

On May 28th 2020, about two weeks after my rotator cuff injury, I was typing on my computer for work when all a sudden I began feeling burning pain in both forearms. I typed a message to my manager and team that I would need to go on short term disability.

Over the next six months, I saw and talked with my primary care physician, two different hand specialist doctors, and several physical and occupational therapists. I was diagnosed with many different things, including carpal tunnel syndrome and cubital tunnel syndrome.

This period of six months saw my condition occasionally improve or plateau, but inevitably I would experience a flareup which brought on the most extreme symptoms again. This could happen after a long walk, using my computer mouse/keyboard even for very short periods of time, or for seemingly no identifiable reason.

Early 2021

I began learning about thoracic outlet syndrome (TOS) thanks to Dr. Scott Werden's YouTube channel. It overwhelmingly felt like the correct diagnosis for my condition.

In January, I saw a neurologist in San Francisco who administered a electromyography (EMG) test. This found nothing out of the ordinary. The neurologist interpreted it as showing that I did not have carpal tunnel syndrome or cubital tunnel syndrome, which I agreed with.

However, she also told me that I was negative for neurogenic thoracic outlet syndrome. Other imaging results after this would show strong evidence that I had TOS. Many doctors familiar with TOS would say that an EMG cannot conclusively determine if someone has TOS (example), but my neurologist was of the other camp. Had I not done my own research to understand this, I believe that my health could have been set back even further. I certainly look forward to the day when most neurologists have a basic understanding of TOS and our ability (or lack thereof) to detect it with different tools.

It was in this month that I began seeing Steve Talajkowski, a physical therapist who understands TOS well, given that he worked under Peter Edgelow, a well known TOS physical therapist. He gave me more confidence that this was what I was facing. However, after several sessions of physical therapy, he recommended that I consider different treatment given the severity of my condition and lack of improvement up to that point.

I received Dr. Scott Werden's MRI which is especially geared towards imaging TOS. This confirmed that I had bilateral neurogenic thoracic outlet syndrome. Here is the summary:

"No spinal stenosis. Bilateral multipoint soft tissue and bony compression of the brachial plexuses, with additional evidence of tension on hyperabduction, as well as abnormal signal intensity of the right brachial plexus. Significant extrinsic venous compression with the arms in neutral position, worsening on hyperabduction."

Mid to late 2021: First surgery

Upon discussing the results of the MRI, I ultimately opted to go the route of surgery. I had first rib resection (FRRS), scalenectomy, and pec minor tenotomy (also known as the "trifecta" surgery) done on both sides. I first had it down on the left side in June 2021, and then again on the right side in October 2021. The first surgery in June seemed to go relatively well, with no new nerve symptoms but also no obvious immediate relief from past nerve symptoms. In short, no real change.

October 2021 - December 2021: Second surgery

Following the second surgery on the right side, I had many new painful nerve symptoms, primarily along the ulnar nerve. Also, my right arm was swollen with edema for these several months. I was in excruciating pain and severe discomfort for these several months, and used gabapentin to manage the pain until I began having disconcerting side effects like inability to focus.

Over the following years, some of the new nerve symptoms on the right side would eventually go away, but the original nerve issues remained on both sides. Basically, these surgeries did not seem to affect my nerve issues in any positive way. Additionally, after the edema subsided on the right side, there was notable atrophy of many muscles on the right side of my body: the pec, right bicep, tricep, forearm, and various parts of the hand.

I also had been cradling my right arm and wasn't able to move my right shoulder enough that I developed a frozen shoulder and an inability to straighten my right elbow. My right shoulder and elbow remain stiff and I don't have a full range of motion.

2022 - November 2023

During this time, I tried different physical therapists and a few modalities to help manage pain and improve things, but my nerve symptoms largely stayed the same or slightly worsened.

November 2023 - Now

Finally in November 2023, I had a flareup for no apparent reason besides hot weather that left me very noticeably worse off. The new symptoms included a weak feeling in my hands/fingers and spasming muscles.

Current condition

I currently have a baseline level of pain that is hard to quantify, but is always at least a little distracting, and at worst completely debilitating. Using my arms for most tasks will consistently lead to a flareup, so I keep my arm usage to basically just eating, dressing, showering, and receive help with as many other activities as I can from friends and family.

Other things that can lead to a flareup:

• keeping my neck turned off from center for a minute or more
• talking loudly
• consuming alcohol
• walking or standing for 15 minutes or more
• sitting in any chair except for very specific ones (padded arm rests, legs raised)
• traveling in a car or any other vehicle (because of the above reason)
• lying down

How I get comfortable

At home, I sit in a specifically padded chair and use a footrest. I use the "stretch sit cushion" (link) to raise my scapula and create more space in the thoracic outlet. Using a footrest for mysterious reasons is important for my comfort. PTs in the past have hypothesised that spine flexion is an important aspect. Whatever the reason, having my legs straight out in front of me is an important part of my comfort.

Needed accommodations

If I am to travel for instance for a doctor's appointment, there is the risk that I could cause myself another multiple week-long flare up if I don't take certain precautions. This is simply because moving around, traveling in a car, sitting in a less than ideal chair, speaking with people, etc. will all chip away at nerve comfort. For this reason, I may be expressing certain needs before or during the appointment to optimize my comfort.

Generally, I will just bring some armrest cushions, a backrest, and perhaps a seat cushion, and request that I be able to use a chair with armrests. Having my feet elevated also greatly helps, and depending on the length of the visit I may brings something for this.

In conclusion

Obviously I'm definitely hoping to get some useful medical help soon. If there is more information that could help, I'm very happy to provide it, and if you've read this far please give me feedback on this page, because I'd like to improve it for future visitors. Thank you!