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.
Kathryn,
ReplyDeleteThanks so much for sharing this. My husband recently was found to have a pulmonary embolism. While he hasn't been diagnosed with Paget-Schroetters, this is still very helpful to read. Hoping you have quick healing, good control, and no more clots!
--Lisa T.
How long after the blood clot did you have your surgery?
ReplyDelete3 months... I had to be on coumadin for 3 months before they would do the surgery.
Deletehow are you making out?
I am recovering from a thrombolectomy and waiting for consult to do a first rib resection. I'm wondering if you or anyone you've run across had experienced chronic neck and upper back pain prior to the DVT and subsequent dx of Paget-Schroetter? I've been a chiropractic patient for most of my life because MD's couldn't determine the source of my pain and manual manipulation was the only way I gained any relief. Now it seems possible that TOS may have been the culprit all along and only recently progressed to a DVT and P-S.
ReplyDeleteHey! Just wanted to check in and see how you're making out! Did you have the rib resection?
DeleteHey Jen! Sorry to hear you're in our unique little club. Glad they caught the clot though, and were able to remove it! I have not heard anyone who had the chronic pain prior to the clot or diagnosis, but it makes sense that it would happen. If your body is restricting blood flow to a certain area that decreases the oxygen getting through as well, and your body can tell you there is a problem by triggering the pain receptors.
ReplyDeleteI just had my final follow up appointment after my surgery. It's not too bad. Hang in there! And keep us updated on here if you can!
Good luck!
My fiance was diagnosed last month. He had noticed the vein distention for about a week, but when it became swollen and purple after lifting he went in and he was in for a week. He's into his second month of Xarelto to keep another blood clot from occurring, and they are trying physical therapy before they consider surgery. I'm going to show him this blog tonight if he hasn't already found it.
ReplyDeleteIn regards to Jen- he has had chronic back pain for a lot of his life. He asked the Dr's if it was related, but this seemed to be their first time experiencing a patient with this and didn't know. After his physical therapy he can feel more blood flow to those areas and complained that he never saw much progress with his shoulder muscles but his arms would be build muscle fine. It makes sense, especially since he was carrying packs up and down mountains and worked out regularly. Those muscles breaking down over & over, but never getting enough blood flow to ever rebuild stronger.
Thank you for your comment! This is most common in men who work out (specifically male body builders). My understanding in speaking with my physicians is clot removal (through catherization) and then surgery is the treatment course if there is a clot. If there is no clot- just narrowing of the vessels which cause pain- then usually physical therapy and pain management. This is not a common diagnosis, so be your own advocate and seek a vascular specialist who is well read on this and has treated it successfully before. A large academic teaching hospital is a good place to look. Hang in there. It gets better with the right treatment! Good luck!
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