Hi! I'm meeting with a vascular surgeon in mid December regarding my left arm. Based on my clinical presentation, I was sent directly from my orthopedic doctor's office the other day for vascular studies. The studies showed problems with both the artery and vein (but no clots!!) so I've been referred me to this doctor by both my PCP and orthopedic doctor. I've already had my other 1st rib removed 4 years ago for neurogenic TOS.

My arm is swollen continually now and has a darker color to it. At times, the hand does turn purplish blue. I do not have nerve pain or paresthesthias. EMG was negative for nerve involvement.

I am researching to be prepared for the appointment. Since a lot of my questions arise from experiences, I am hoping you can share some thoughts.

Questions:
Can they do anything conservatively if it is primarily vascular TOS?
At what point do they consider surgery necessary for the vascular form of TOS?
Are you only considered to have the vascular form if you develop clots?
Besides the scalene block which lasts only a few hours and Botox, are there other shots they can do into the brachial plexus?

I am hoping to avoid surgery!

I hope you can avoid surgery too!

Look up 'effort thrombosis' and 'paget schroetter syndrome'. These are the exact medical terms for the condition of blood clots in subclavian veins due to TOS. Hope that helps with your research.

I was referred for brachial plexus injections at one point. Tried to find a qualified pain management to do them, but I didn't find anyone close who was qualified. Scalene and brachial plexus are two different areas. apparently, the way I got it, the brachial plexus is a very serious procedure. I did find one pain management doctor that was qualified but he hadn't done any yet. so.....

Surgery? well, I know TOS is tough to live with but many doctors before and after my visits with the cardiothoracic surgeon caution me about the outcome. it's still a very very tricky diagnosis to fix. be careful. once you're surgically altered, you're just that - altered. I've not been satisified with the possible outcomes, although at times, TOS has made life a living hell for me, my husband and my dog. not so now, but oh I remember the many dark hours in the morning, just me and my dog.... I would wake up and I had been crying in my sleep with pain in my arms.

mtnmom - thanks for the search suggestions! The effort thrombosis descriptions described the symptoms almost to the T.

(Broken Wings) - unfortunately, I am already aware of what happens in surgery for TOS. I had my other rib removed a few years ago as a result of a MVA. The shoulder/arm was injured in the car accident triggering the TOS. I was predisposed due to an abnormal 1st rib. At this time, I am still symptom free on that side. Knowing now what the recovery time was like and knowing what they do in there, I don't know if I could do it again. However, if it came down to developing blood clots or progressing symptoms, I'd consider it again.

If this surgeon says I need to have the rib out, I'll seek a 2nd opinion with the surgeon who did the 1st surgery.