Shoulder/arm pain related to Parsonage Turner Syndrome
I really need some help/advice. I have been having right shoulder pain which doctors told me for years was bursitis. The pain got worse so I went to a neurologist because i honestly thought the pain was too bad to be only bursitis. Also, the pain radiated past the elbow and to my wrist. Nerve testing turned out normal. I never had any imaging done.
Fast forward to Oct. I got a flu shot 22Oct in my left arm. About a week later I had a bursitis flare (right shoulder) that lasted about 3 days. 2 days later the pain started again, but it was so severe I literally had no range of motion due to pain. It was sharp, stabbing, radiating pain in the front of my shoulder/armpit and tip of my shoulder. The pain was constant and severe but I would still have these episodes where it got even more severe and I bawled my eyes out. Ibuprofen always worked to relieve my bursitis but even the ibuprofen 800, muscle relaxer, and tylenol I was taking didn’t touch the pain. Urgent care x rayed my shoulder – found a huge calcium deposit. Went to the ortho, gave me a coristone injection that did absolutely nothing. Severe pain continued. Then I woke up and couldn’t hardly move my arm. This wasn’t due to pain, it was as if my arm just stopped working. It had no strength, but it was only my upper arm, not forearm. Sleeping was impossible as pressure on my shoulder blade caused pain, too. A week later I got an MRI to prepare for arthroscopic shoulder surgery to remove the calcium. MRI showed several calcium deposits and mild tears. The surgeon said I would feel instantly better after surgery to remove the calcium. I was looking forward to no more pain as by this point it had been over a month.Oddly enough, About 3 days before surgery, I finally got my range of motion and strength back and little pain.
Surgery to remove calcium and decompression went fine, but a few days later, I started to feel pain in the front of my shoulder from armpit/chest to clavicle – pretty much same pain as before. Then I felt almost like a popping – like a tendon or something popping out of place. It was so painful and occurred during minor movements and about 10x per day.
It’s 5 weeks after the surgery. I still have very little range of motion but not because of pain. My PT can move my arm much further in all directions than I can. After my first PT visit though, I had an episode of severe pain. I cannot even explain the level of severity. It almost made me go crazy. It lasted 2.5 hrs. It started in my armpit/chest/shoulder and radiated to my elbow/funny bone then to my forearm/wrist. It starts out small then gradually radiates and causes the most severe, intense pain. Ever since, I’ve been having at least 1 episode a day. It is debilitating. The PA keeps telling me some people experience pain longer than others, but I don’t think this is surgical pain at all. Aside from the episodes, I do still have more dull pain in the same areas – it just seems to constantly flare up. I am now on gabapentin, meloxicam, and vicodin.
I’ve researched some things and found that Parsonage Turner syndrome sounds very much like what I am experiencing. I have also found info on pancoast tumors which also cause symptoms as mine.
How can I find someone who can help me rule out or diagnose these? I don’t want to keep seeing different specialists for every little thing. Where do I start? I am desperate for help as I do not have good quality of life anymore. The pain has been debilitating.