I haven't posted new updates in a few years because there aren't many to post! I'm still very active, am able to do all the things I love, and have not had any recurrent clots.
I do, on occasion, still get color change with extensive arm exercises or certain yoga poses. But my normal color returns as soon as I stop that exercise. I have some residual numbness in my shoulder from the surgery. There are certain shirts that rub the numb spot and cause a tingling sensation- which is annoying, but not painful. And it only happens a few times each year.
I am thankful that I found a good team of physicians the first time around, but I was also seeking information and determining the best course of treatment on my one and comparing that to the one suggested by the doctors and surgeons (my research and their recommendations aligned).
If you have Paget Schroetter's (also called Thoracic Outlet Syndrome) hang in there! It can be a long road but you'll get back on track.
I still get alerted of comments on the blog and try to reply in a timely fashion. Hope this is helpful in knowing you're not the only one!
Thanks for your blog, my 32 year old daughter has just been diagnosed with PSS. She is a yoga instructor and is super depressed right now. The clot was removed today and now the discussion about surgery. My daughter is still in the hospital, we were told they wany to do the surgery soon. Right now searching for a surgeon with experience who can do the procedure...she is in Columbus, GA.
ReplyDeleteTell her to hang in there! We're the same age, but I'm several years down the road in my recovery.
DeleteI didn't need my rib to be removed, they just cut a few tendons and muscles which were pinching my vein. He was a vascular surgeon.
I would recommend a large academic hospital (one in a large city).
It gets better! She is welcome to contact me through this blog, I would be happy to give her some encouragement! I'm pretty active and there aren't any activities I've lost as a result of this. I'm still able to do all the things I love!
Did you find a surgeon & how did you go about doing it? My son has Tricare and needs referrals as he is in the Coast Guard.
DeleteMy son has this. He is 19 & in the Coast Guard. The clot has hardened. It is older. It happened in November. He had a venogram done at a small hospital by a vascular surgeon. It did not work. He referred him to the University of Michigan medical center. He is supposed to have a venogram done again there on Wednesday. I'm concerned because we have had no consult & his specialty is vascular & interventional radiology. He is not a vascular surgeon. I'm not sure what to do!
ReplyDeleteDeep breaths!! I think the best thing he has going for him is he's going to be at the University of Michigan which is a major academic and medical center- which means more resources and more knowledge!
DeleteMy clot was removed by an interventional radiologist. They are specialists in their own right and generally are very good at what they do. They do clot removals more than you'd care to know.
My vascular surgeon, first I got him on a recommendation from one of my other providers at the hospital. If your son likes his interventional radiologist, ask him who he recommends for a vascular surgeon. If it's convenient, continuing his care at University of Michigan wouldn't be a bad idea!
I didn't see a surgeon until a few months after the clots was removed. He cut a few muscles and tendons in my shoulder so this wouldn't happen again. Some people need to have their first rib removed as well- they didn't need to in my case.
Because this diagnosis is so rare, there are few true "specialists" on it. My medicals and surgical team was excellent, but I was their first case. I was comforted because they were very well read on it and knew the recommendations for treatment (this is why the academic centers are great- research and evidence driven treatments).
Clot removal is first. They're starting with the right step. Don't be afraid to ask questions and look the doctors and surgeons up to see where they got their education and how experienced they are!
Let me know how he does! I'll be sending good vibes his way on Wednesday. Everyone's recovery is a little different, but we get there!
Also, feel free to have him contact me through here, I'm about six years further down the road to recovery, so I'd be happy to compare symptoms and experiences, etc. I started this blog because I felt like I was the only one, it helps to know there are others out there who are on the other side and doing great!
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