[eveewonder]

Hi, broke clavicle when young. It never healed right but caused no problems. Then at about 40yrs old had DVT in arm. Had DVT removed, subclavian vein damaged stent put in. Ortho docs plated clavicle to stabilize it. Nerve problems since then. Has gotten progressive worse. Stent broken and bad blood flow in arm but vascular says that is ok my real problems are from nerves and have TOS now. Sometimes it isn't too bad other times excruciating going into my neck down arm into hand, wrist, chest. Worse pain starts in middle of collarbone, the scalene actually feels sore to the touch, pain goes up side of neck into face up to left eye. Horrible. It all seems to have to do with movement usually it is all the small things that get it going crazy. I could never do an exercise class or anything because my arm would become very heavy and tired and painful. My arm hurts just carrying the weight of my dogs poop bag while walking here! If I could spend life sitting with something holding the weight of my arm at just the right position and don't move it I would be ok. Anything sound familiar here?

I wish this could be fixed but I'm scared. Dr's say to do anything is complicated and dangerous. I don't want a rib removed or scalenes cut because this problem with all the nerves etc didn't happen until steel hardware, wire and cadaver bone struts were put in to fix a 35 year old clavicle break. I've heard of surgery where they remove part of the clavicle. Did anyone ever have that? Does all this sound like TOS or what? Thanks for reading all this stuff and any thoughts, experiences others can share. Thanks.

[kellysf]

Welcome to the board.

Unfortunately, this does sound very much like TOS. I have the same pain path that you described, except my pain does not originate in the clavicle. I never had an injury but I've read that a broken collarbone can lead to TOS.

Which doctors have you consulted? Are they experts in TOS?

[Jomar]

I was wondering the same thing, I would only see TOS specialists about this now, don't waste time going to non TOS surgeons/specialists.
Check out TOS doc sticky thread -to see if any are close to your area.
http://neurotalk.psychcentral.com/thread135.html

The experts do these surgeries and do repairs all the time, you could even have internal scarring causing some of the problems. They can clean that up also.

I don't know how your posture is , perhaps some expert posture/body work might be helpful if you head/shoulders are forward or mid line, making some room for nerves/blood flow could help.

[eveewonder]

I am seeing some doctors at HSSin NYC now at the Brachial Plexus center and I saw Dr. Darren Schneider a vascular surgeon who works with the HSS Drs. I live in NJ. It sucks because I didn't have pain until this stupid clavicle repair. I'm afraid to let anyone do anything because I don't want it to get worse. I live alone and don't have people to help with much. I'm also afraid it is getting worse and the nerves will be permanently messed up. I also don't think the collarbone ever really healed together and either do the doctors. There is a big lump of bone that presses up into the side of my neck. I can't even hold a cup of water without pain starting up. I would love for this arm to be better but don't have a lot of hope for it. It has been going on 5 years now. I know the vein is permanently damaged but I guess that isn't what is causing problems now. The only reason they plated the clavicle was to protect the vein and all that did was cause nerve problems. What a freakin waste and poor decision

[curby]

Originally Posted by eveewonder

I am seeing some doctors at HSSin NYC now at the Brachial Plexus center and I saw Dr. Darren Schneider a vascular surgeon who works with the HSS Drs. I live in NJ. It sucks because I didn't have pain until this stupid clavicle repair. I'm afraid to let anyone do anything because I don't want it to get worse. I live alone and don't have people to help with much. I'm also afraid it is getting worse and the nerves will be permanently messed up. I also don't think the collarbone ever really healed together and either do the doctors. There is a big lump of bone that presses up into the side of my neck. I can't even hold a cup of water without pain starting up. I would love for this arm to be better but don't have a lot of hope for it. It has been going on 5 years now. I know the vein is permanently damaged but I guess that isn't what is causing problems now. The only reason they plated the clavicle was to protect the vein and all that did was cause nerve problems. What a freakin waste and poor decision

Have you considered a second opinion perhaps with Dr Donahue, Boston?

[eveewonder]

Originally Posted by curby

Have you considered a second opinion perhaps with Dr Donahue, Boston?

Hi, I'm still working with the doctors in NYC at HSS and I'll find out more in mid April what they suggest. It is hard to travel to see a doctor. If there is no doctor in NYC that can help I sort of feel like maybe this condition is just too odd to let anyone mess with. It is hard enough because friends and family don't really understand because you can't see the problem and they don't know anyone else with the problem and have never heard of it. This thing can really be a bummer as I'm sure you all know. I have an EMG in a few weeks. I don't even know if these nerves could get better. I sort of think there isn't permanent damage because the pain and problems all change with position and it is usually subtle movements or holding small things, glass water, pieces of paper, a towel etc. I had an EMG about 4 years ago and it showed all different nerve problems.
Good luck to everyone out there dealing with this!

[kellysf]

I wasn't seen by him but I do know that Darren Sneider is experienced in TOS. He was doing the surgeries at least 8 or 10 years ago at University of California San Francisco. I'm not sure if he's as experienced at Donahue, but he's not someone who's never done this surgery.

Good luck.