I had my surgery on November 16th and am doing very well! It went better than expected, the surgeon did not have to remove my first rib (yay!) and only released several tendons and muscles from my neck. I do not look any different (my neck is not thinner on one side or deformed in any way) aside from a small incision scar that will eventually be barely visible. The most significant pain I experienced occurred as the neuropathy lifted and I was able to feel my shoulder again (manipulating the nerves in surgery leaves temporary numbness, and in few cases can be permanent). Otherwise the pain has decreased significantly. I have started light yoga exercises to regain range of motion and stress. God, how I missed yoga! It's coming along and I'm hoping to return to work by the end of December if I am able.
During this process I have had the pleasure of meeting other unfortunate persons with the same diagnosis. I'd like to anonymously share their symptoms and experiences to further spread awareness of the severity of Paget-Schroetter's. The two women had color changes in the affected upper extremity, along with mild swelling, and distention of the veins (veins were sicking out as if a tourniquet were applied). Function was not impaired, and there was mild- if any- pain, so they did not seek medical attention. Most people do not seek attention for this particular syndrome for several weeks. The first waited months and until she had begun to experience a loss of feeling in her affected extremity and a slight loss in function. By the time she saw a physician the damage was permanent, she lost total function of her arm and has permanent neurological effects (memory loss, "cloudy" thinking, etc). The second woman waited several weeks, and although she had some slight neurological complaints, function and feeling of the extremity remain intact. Her physician was unable to remove the clot immediately due to damage to the affected vein. She has to complete 6 months of anti-coagulation therapy before removing the clot, and eventually proceeding with her decompression surgery.
Although this rarely takes someone's life, it definitely affects your life, and it can permanently alter it. If you experience any of the symptoms (change in color, increase in size, vein distention) seek medical attention immediately! It's better to be safe than sorry. Clots can occur anywhere in the body, and in many cases are life threatening (they are the causes of heart attacks, strokes, and pulmonary embolisms). Increasing your knowledge can safe your life.
If you know someone who has Paget-Schroetter's Syndrome please feel free to have them contact me through this blog, even if I do not know them. It is easier to go through this when you know someone else who has been through it.
