Good morning! I was so thrilled to stumble across this forum while trying to figure out what is going on with me. I was diagnosed with Paget schroetter syndrome in June 2010 after I hit my collar bone. Ultra sound showed 4 veins clotted from my jugular to my finger tips. My surgeon did the balloon to open the vein back up. 2 weeks later he removed part of my first rib. After my surgery he told me he had some issues due to no fatty tissue, so my scar is bigger than expected. I was sent home the next day with no limitations. Day 4 post op I had a vein rupture. The emergency room was instructed to put a pressure pack on it and I went to see surgeon the next day. He said everything looked good, took pressure pack off and took me off my warfarin, with instructions to start pt. I noticed 8mo or so ago that I can do minimal with the arm on that side without it falling asleep. The headaches, arm and shoulder pain are getting to be constant and is definitely interrupting my sleep. The veins around the area and on my shoulder do bulge a little after using my arm. 4 days ago I thought I was coming down with the flu, I was very lightheaded, which caused nausea. The lightheaded has not gone away and is getting worse. I work retail, so I'm very active on my feet all day, by 4pm I literally go home to bed I'm so miserable from the lightheadedness. I'm wondering if I'm having some post op complications? I do not want to go back to my specialist as I felt he had no bedside manners and answering my questions seemed to be a waste of his time. Any suggestions, advice anything would be greatly appreciated! Thank you for your time.

I have Paget-Schroetter also but have not had surgery yet. Are you still on Warfarin? If you are on that and any other medications you might want to consult your pharmacist. Obviously they are not specialists in our disease but they can be very knowledgeable in general. Also, have you seen your primary DR.? Just in case the light-headedness is not related to the disease and is something else...Now I have a question for you because reading your post made me curious. Why did they remove only part of the rib? Did they say?

I was taken off warfarin 5 days post op. The specialist said he only needed to remove part of the rib. He also said by the amount of scarring tissue I was probably born with PS Syndrome and aggravated it when my collar bone was hit.

I live in a 9000 population town and have not been to my regular Dr. due to when I first went in with the symptoms they had no clue what I had and was going to leave me on warfarin the rest of my life as a cure. I'm the one that pushed to see a specialist.

My question to you is why haven't you had the surgery yet? The specialist I saw told me I had to have the surgery ASAP due to nerve and tissue damage that was happening. two days of seeing him I had the balloon done to open up the vein and two weeks later, time allowed for healing, I had the partial rib removed. Not saying my specialist is the best, but something to think about.

I am not sure why surgery wasn't the first recommendation in my case, but I'm not unhappy with that because there was no one here probably competent enough to perform it anyway. I think with this disease (and other rare diseases) the medical advice depends on where you land. I live in a more populated area then you but there's a lot of ignorance about it here too. I ended up switching primary docs because one was so unresponsive. Thank God the 2nd one sent me to a specialist 90 miles away, 6 mos after my clot. It just took time. And now I'm waiting for authorizations and questions to be answered. No one is suggesting to me that I go off blood thinners without a surgery, so that's kind of what my choice boils down to.

Your surgery was in 2010.
My thoughts,
With increasing symptoms now, those could be due to internal scarring/tissue adhesions, and /or any combination of those also depending on how much of the rib stump was left, it could be a factor too.
Some people have an overgrowth reaction of adhesions/scarring that attaches to things in the surgical area. It can cause as much troubles as the actual TOS causes can.

I think most TOS surgeons now remove the whole rib so the stump doesn't cause any problems later on.

I would suggest seeking an expert TOS surgeon to evaluate how you are doing.
Drs list link & useful info links -
http://neurotalk.psychcentral.com/thread135.html
http://neurotalk.psychcentral.com/thread84.html

DinaRR
I am also 2 years post op (left side)...mine was neurogenic TOS. Had complications (Chyle Leaks) & required 2 further surgeries, was in the hospital almost 1 month. Long story short, have had numerous issues and most recently have had strange facial numbness/pain along with being lightheaded and some nausea too. Can only lay on my non-operative side yet have all this occur on the operative side & as a result am so exhausted and feel ill much of the time. I too am frustrated ... your experience post op sounds similar in the respect of getting answers from the specialist as to what is causing these problems and not wanting to return to the specialist. I really believe that scarring/adhesions are what is causing these issues, even though I have been told by other doctors that is not a possibility or just don't want to get invoved. Also wonder now if the rib that was removed may have been just partial? and scar tissue has attached to the remnant. Curious to know if you find a solution.

chloecasey