I posted about a month ago...

Just to briefly recap... I First started out two years ago with a torn labrum, after my 4th pt visit my right arm became swollen and bright red. I found out I had a 6" long (yes thats inches) blood clot in my right subclavian vein. At the time my SC joint was unstable.

I then went to USC and Saw the head of Vascular and Kerlan Jobe for my ortho issues . The conclusion was that my ortho doc had to stabilize my SC joint to help prevent further damage to my vein. I had surgery last Nov. , I went back to work full time in August and now pain is worse than ever.

I check in with my ortho doc once a month, he sent me back to vascular at USC. At the end of this month I will be getting a venogram and then making the decision to get surgery or not.

The Vascular Doc wants to go in through the top of the clavicle and do the First rib resection and scalenectomy. He also spoke about possibly having to preform a bypass since I still have a blood clot in my subclavian.

I guess I am just not sure what to do, He said " this will not cure you". "It may help with pain" "your case is so rare that I cannot possibly predict if it will help"


After the venogram result come in I will be going up to UCSF for a second opinion.

I just don't know what decision is the right one. I want to be able to live a happy life and hold my (future) babies!

I am so glad I found this forum, seems like one of the only things that helps me .

sorry to hear what you're going thru. My shoulder is messed up and I believe I have SC joint issues as well. What did they doto stabilize your SC joint?

About surgery --- what are your symptoms? how do they come on? any postural issues? is one shoulder higher than the other? is your musculature enlarged on one side? how did you get TOS?

About a surgeon --- you might want to see an EXPERT in TOS. Dr. Gelabert at UCLA, and other Dr's frequently mentioned here. Paget Schroeder (sp?) isn't that rare for TOS. Someone skilled/experienced in TOS surgery can make a big difference. I am glad you're getting a second opinion. Usually TOS from clots responds well to surgery.

My doc did a reconstruction of my SC joint. He detached the collarbone from the sternum and then drilled holes and tied knots with a cadaver tendon. He wrapped the site with kevlar tape to keep it in place. A horizontal section of the inside of my collarbone was also taken out. The hardest part was that he had to detach the stenocleidomastoid muscle, which is one of my biggest struggles.


It is not so much the PSS that is the rare part. The Vascular guy said that its rare to have had my SC surgery and then to do a Rib resection.


My posture has not suffered to much, I stand and sit up straight. My right shoulder sits forward and my trapezius muscle is rock solid :/ <--- painful!

Lately my whole hand has been going numb and at times I feel like my elbow goes numb as well.

I asked my doc who is one of the top docs for SC joint issues about UCLA and he has said that he has seen many complications come from their surgeries.

The doctor I am seeing for vascular is a chief of vascular surgery at Keck Hospital. He is known for having very steady hands.


where have you read about TOS and blood clots?

Thank you so much for your response, it means a lot to have someone to talk to that does not think i am crazy.

What kind of work do you do?
That could be related to worsening sx.

No thinners given?
And it could be that the 2 separate things need to get done. the SC fixed, and then the resection.. if testing shows to be the compressing issue.

I think they can also do a doppler?? sonogram type test where you move arms to positions and it will show the stoppage of bloodflow if that is the case..
I didn't have this test but maybe others will explain it better..

Are you getting any expert PT for the rock hard traps?
could be triggerpoints as well a spasms - those can cause a lot of problems also.

Wow, that sounds really overwhelming! I'm sorry you have to go though this!

I just had an experience with vascular TOS, and though I had no other symptoms, the surgery did immediately correct the compression problem. My surgeon said that with the vascular compression surgery is pretty cut and dried and almost always successful unless there are other problems present. His opinion was that for someone like me who is very active, surgery was the only way to quickly resolve it and keep it from happening again, which is what I had asked for. I know it can be more complicated for people that also have nerve compression. My incision was under my arm. At 6 weeks post surgery I feel almost normal now, I'm back at the gym and the vague achiness I felt in my collarbone/arm/scapula before the surgery are gone. I hope you can get answers and relief! Good luck! I don't know if my experience can help in yours but I'm happy to answer any questions.

As far as what to read...

I read a lot on PubMed: http://www.ncbi.nlm.nih.gov/pubmed

This (very thick) book also has a lot of good info and also describes exactly what happens during surgery: http://books.google.com/books?id=D6S...page&q&f=false

The only thing that released my child's rock hard traps was trigger point dry needling done by a physical therapist. More success was had after 1 session on each side than in months of therapy with massage and stretching. However, not everyone sees the same success.

I was on on coumadin for roughly 11 months... It tore my stomach apart (my body only reacted to 12.5 a day) <--- which is beyond any normal dose. My INR just was not get high enough.

I was told it is now a permanent clot and will not move.


My SC reconstruction was the surgery that stabilized my joint.

I have had plenty of ultrasounds and now will be going for a venogram at the end of the month.

This is all a workers comp case so the approval to get PT is not happening. I did however just heard that I will be able to start seeing an acupuncturist.

I am currently not taking any pain meds because of what the coumadin has done to my body, I survive off of Lidoderm Patches.


It means so much to have people to talk to.

Thank you

Another thing I am wondering is...

Why can't they do a bypass at the same time as the First rib resection and scalenectomy?

I thought they could.

veins are clear...

kind of lost now.

next step MRI of Brachial Plexus , any advice?