hi! i am also a tos sufferer looking for support&info
 

Hi everyone. I just joined this forum and I am so relieved to know im not the only one struggling with this. I too am hoping to get some feedback from other sufferrers about their post surgical outcomes. Just to sharw my story (as briefly as possible) i was diagnosed this past june with venous tos after I painted my living room and developed a complete occlusion DVT in my right subclavian vein.

I never really noticed any symptoms prior to this,i always just tbought i had decreased strength and my arms went numb when doing my hair\above my head. Initially they diagnosed me with paget schrotter but when they did the venogram they noted long term damage in my subclavian. I underwent 1st rib and anterior scalene removal and was sent home. 10 days later I was diagnosed w another clot in my subclavian and a clot in my axillary vein. They did a trellis procedure to remove the clots and sent me home a few days later. I will be on lifetime coumadin because I was also diagnosed at that time with antiphospholipid syndrome, an autoimmune clotting disorder. Additionally,I've had symptoms on my left side as well.

I just saw my doctor for my followup. At the time of my surgery he said it would take a full year to recover and to know if there is lasting damage. Since surgery I have suffered with chronic pain, swelling, and occasional discoloration of the arm, spasms in my neck&back, inability to sleep on my right side, numbness, tingling and what I think is neuropathy. I asked my doctor why I was in pain, he said he didn't know, that it wasn't post thrombotic syndrome and that it was likely 'nerve adhesions'. My options are a venogram to determine if surgery to repair my damaged subclavian is possible. My surgeon has only done 5 in his career. Being that I am only 28, and I am unable to work I am considering surgery but, due to my doctors lack of experience and a bad experience with a resident during my last procedure I am seeking out a specialist. (It is always your right to refuse care from residents&students and I encourage it, there is no reason to allow someone to practice on you when doctors who have been doing this over 20yrs still lack experience treating the condition) anyway, i feel that everyone should get a specialist and second and even third opinions, when considering something as important as surgery to regain function of your limbs.

From the research I've done, there are two doctors I am looking into. Dr Robert thompson at Barnes Jewish thoracic outlet centet in st Louis. And Dr dean Donahue at mass general. Additionally, on my search I found a Dr in Denver and a few in California. And one in Arizona that had a lot of positive outcome patient reviews. I should've written their names down too but I'm I'm upstate ny so I didn't write them down but this site has a great list of drs. Who specialize in tos. In a different thread

If anyone else here is reading this and has had experiemces with either physician if you could let let me know how it went I would b so appreciative.

I wish you all the best of luck with your conditions and would b happy to update you on how things go with mine.

:-) mck


"Autoimmune disease, because the only thing tough enough to kick my ***, is me!"

Hi there!

I believe you are referring to Dr Gharagozloo in AZ and he did both of my surgeries. I am happy I had the surgeries but I am not yet 100%. My last surgery was at the end of Oct 2014 and I am still at home, unable to work. The pain has decreased significantly but increased activity causes pain. So what I'm trying to say is that I feel fine if I don't do much but once I try to use the computer in a work simulated environment the pain comes back. Considering I was in the pain 24/7 and not mild pain, this is progress. However, I do not know when or if I will be 100% again.

Between dr Thompson and dr Donahue, I would go to see dr D. That's from what I learned from others.

I have obtained great info here on this site and see many folks who are strong willed. My respect goes out to all who continually post here. Believe me, I wouldn't have gained half the knowledge I now have of TOS. With that said, it is also the most depressing place to read info. I'm sorry to put it so bluntly. I'm also sorry to anyone...and I mean ANYONE who deals with TOS. It is truly baffling to me right now. Please continue to fight the good fight, for others it's still a struggle to even wrap their head around.

I've gained a new respect to anyone experiencing subjective irrmeasurable "pain". Eff TOS.

I got retrenched today :( Time to find a company who will take on the liability of someone with TOS/RSI injuries...... gotta think a bit positive tho, perhaps teaching or something like that where you can do a lot of standing, no lifting, and minimal desk work.

Iv been reffered to a neurosurgeon specialising in the brachial plexus area- my dr seems to think my TOS is neurological. I gather its a contentious area over whether to operate or not.

Thanks for the PT advice, il start seeing her less. Physio did get me off the couch, and out of the 'self pity' stage. i now do Pilates daily which helps sometimes, hinders other. Most importantly though, it takes my mind off it!

Thank you all for the support.

Richard

Bobby, I hear ya. If you think this place is depressing, try the Facebook group, haha!

Don't get me wrong, I got a lot of good info there too but it was way too much and I left the group. People will post about their pain every few hours and then everyone else joins in. About 1500 members.