[yabatopia]

Did your doctors or therapists consider Thoracic Outlet Syndrome? I've struggled with severe pain in shoulders, arms, hands and fingers for several years. It was sort of discovered by accident. They removed both of my first ribs (rib resection) and in combination with a Kinesis keyboard and a Wacom pen and tablet as a mouse replacement it's much better now.

Unfortunately, the solution came a bit late. The strain on my nerves and blood vessels caused by the thoracic outlet syndrome has damaged my arm nerves. And after the second rib resection, the one on the left side, my plexus brachialis got severely damaged. It took nearly 2 years to partially recover. My left arm gets tired very fast in certain positions, my left thumb is partially numb and sleeping on my left shoulder can be painful.

I can't image how much worse it would be without my Kinesis Advantage keyboard and my Wacom Bamboo tablet. Using another computer or laptop with an normal keyboard, touchpad or mouse, is hell. An iPad Pro with a pencil (and a tablet stand to hold the tablet) is much better.

[xr82]

Wow! Another TOS survivor. Despite all the RSI talk in the programming community, I still find it very rare that someone is actually diagnosed, let alone, goes through TOS. However, I do suspect that its prevalence is higher than estimated in this target community.

TOS killed my programming career. It ruined my life and brought me untold mental and physical pain. At one point I couldn't use my arms for more than thirty minutes a day. Even taking a shower was exhausting. I underwent two surgeries, one two remove the ribs and muscles entrapping my nerves. After the first surgery things were good for awhile, my hands were no longer purple (due compression on the vein/artery) and I could actually use a keyboard again. Unfortunately scar tissue grew over my nerves and entrapped them again. At this point I required a second surgery to remove the tissue, which worked quite well and enabled my to use my arms again. Unfortunately, nothing is perfect in life and I still have some tissue that is interfering with my neck and causing chronic pain for which I take a variety of medications for. I currently work a low end job in health care because I can't sit at a desk for 8 hours a day without substantial pain (trust me I've tried everything, at this point I could open an ergonomic store).

I just want to give a shout out to a fellow TOS victim, especially one in the tech world. It's a very rare condition and it's very damaging (imaging not being able to touch your phone without pain) and I wish there was more awareness.

[swampthing]

Wow, I don't feel quite so alone anymore. I went through something similar, although I didn't have it as bad as you. I couldn't shake hands, lift a grocery bag, or drive for quite some time. The doctors I saw were stumped, and I got the sense that no one wanted to deal with it. I went to a PT, who guessed the problem incorrectly (in hindsight), but whose recommended exercises fortuitously happened to also help with TOS. It wasn't until many years later that a sports medicine doctor mentioned TOS as a possibility and everything clicked.

Can I ask how you were able to determine there was scar tissue? Was it just someone feeling it out or did you get an MRI?

[servytor]

What. You complained about back pain and your doctors ended up removing your first ribs?

[yabatopia]

I had severe pain in my fingers, hands, arms, shoulders, neck and head. Back pain came only in a later stage.

For my pain in hands, arms and fingers, the root of the problem was thoracic outlet syndrome. Exercises and physical therapy didn’t help, so the only option left was a rib resection, the removal of the first rib on my left and right side. It’s better now, but unfortunately years of compression of the nerves an blood vains resulted in permanent nerve damage.

Unfortunately the second rib resection caused a severe brachial plexus injury, resulting in extreme pain, weakness and the inability to use my left arm for several months. I couldn’t hold a glass of water, grap a small object or lift a pen above my shoulder. It took about 18 to 24 months of intense physical therapy to partially (80-90%) recover from that.

For my neck pain the remedy was an anterior cervical discectomy and fusion, surgery to remove a degenerative disc in the neck. I still have headaches on a regular basis, occipital neuralgia to be precise, 3 or 4 times a month. Pain killers and laying down in a dim or dark room for 18 to 36 hours (in bad cases) helps.

And for my back pain I’m on a steady schedule of 5 to 6 Radiofrequency Facet Joint Denervations a year, supplemented with 2 or 3 epidural infiltrations to counter radiating pain in my right leg. After 4 or 5 months the positive effects of the denervation gradually decreases. In that case I can use a medical TENS unit to treat the pain.

And, of course, painkillers: the extended-release form of tramadol.

And it all started with some pain or inflammation in my right wrist, easily fixable with an ergonomic mouse, keyboard or better posture, right?

[foofoobar]

After years of pain, I was also diagnosed with TOS. I will not go for surgery however, as this can make things more complicated. A split keyboard (I got the moonlander some months ago) did have a little effect for me, however not a huge one I was hoping for. I'm trying/doing a lot of posture related exercises. Some days its better, some days its hard to get through the work day. Would appreciate any hints which made things better for others with TOS and a desk job. It's a constant trial & error with ups and downs here.

[yabatopia]

I would definitely recommend a sit-stand desk. Variation is key. Try to figure out if holding your shoulders up or down makes things worse and adjust your arm support accordingly. A good desk chair can help, with adjustable or removable arm support. You can try out different ergonomic keyboards or mice, but that can get pretty expensive, with no guaranteed results (and lots of frustration). Look on eBay for used ones or find a vendor with an extended return policy.

Take enough breaks, no matter what. Take a walk, no matter how short. Get the blood and nerve signals in your arms flowing.

Switch between desktop, laptop or tablet during the day. Use them for specific tasks (like reading mails on your tablet, development or content creation on your desktop and casual browsing on your laptop.

But I’m pretty sure you’re already familiar with most of my advice.

[foofoobar]

Thanks for your hints!

[swampthing]

Pretty sure I have TOS too — it's how I came to discover Kinesis keyboards. It's manageable for me now, but I would be curious to find out if there was nerve damage so that I know how further I can improve and what's futile. Can I ask how the doctors determined that there was damage to your arm nerves? E.g. what sort of imaging / tests do they do?

[yabatopia]

In my case, the first clue came by accident. The MD asked my to hold my arms up and after a short time it became really painful and intolerable. Another one rest is taking your pulse by hand while holding up your the arm. If the pulse is pretty weak, hard to feel or completely disappears, that’s a strong indication for TOS.

An electromyography or EMG is also often used to determine neuromuscular problems or nerve damage.

A MRI scan can also reveal TOS problems, but the medical technicians must be familiar with it the tests and and execute them correctly. In my case the MRI scan was negative, probably because the test was only partially done (in hindsight).

For me, the real confirmation came after an extensive arterial duplex ultrasound examination at a university hospital. Various head rotations, arm and shoulder positions were examined. In some positions the arterial flow in my arm completely disappeared. The examining specialist physician, a professor of medicine and specialised in TOS, called it one of the most clear cut cases of TOS he has ever seen in his career.

Based on the MRI scan there were some serious doubts that TOS was the problem, bus the ultrasound tests made it perfectly clear. It’s shows that it is really important that you consult doctors or surgeons very familiar with Thoracic Outlet Syndrome. Search on the internet for recommendations or specialised medical departments.

Best of luck!

[swampthing]

Thanks — I appreciate all the info and advice! This is invaluable.

[rangersanger]

Wow. This sounds brutal. No they haven’t. But the split keyboard has fixed. I think my pain is all self induced.