Vascular thoracic outlet syndrome

I'm experiencing what I think is Vascular Thoracic Outlet Syndrome in my left arm, same side where my PM is located.  Appears to be a circulation problem vs. nerve impingement at this point anyway (swollen arm, some aching, weakness/fatigue especially with any use, very visible/raised blood vessels in areas (new/unlike other arm), discoloration (arm is different color than other).  My PM got replaced end of June with a larger one and this one has always bothered me (itching, occasional "pinching" feeling).  It checks out okay function-wise according to tech.  May have nothing to do with the VTOS but to be sure I first saw EP doc who put it in.  He was pretty defensive/insensitive, quickly saying nothing he did (enlarged pocket to fit in new PM) could be causing my problem.  Said it would have happened when 1st PM was put in if it was going to happen (different doc put that one in).  Said to see a vascular or neurological doc....   I've started that process, first with my PCD (ordered ultrasound of neck/arm, chest x-ray, blood work.... all tests normal).  Next step may be CT Scan but as of now, being told Medicare won't approve.  My PCD thinks it may have something to do with PM placement, but will be back there next week for next steps...  Has anyone experienced this problem with the cause being from PM placement?

3 Comments

TOS

by justice - 2019-07-13 13:57:47

Yes
I developed this and found that a chiropractor was very helpful in relieving the pain as well as certain exercises 3 x per day
I am also in Canada and have a large Medtronics ICD which replaced my pacemaker
 

Venogram

by PacedNRunning - 2019-12-08 05:47:44

I got diagnosed with this 8 mos post implant. I had a venogram to confirm. I've read a venogram is the best way to rule it out. 

Subclavian Vein Stenosis

by Aulee - 2019-12-08 09:43:49

Thanks for input, justice & Pacedmyruns.  Did have a venogram and confirmed "subclavian vein stenosis at pacemaker lead" - supposedly caused by scar tissue forming where lead enters vein.  They attempted a balloon procedure but couldn't get through (from arm) & I've decided not to do the procedure up through leg.  They said it probably wouldn't last very long even if initially successful.  Meanwhile, collateral veins have formed, swelling/discoloring now gone, and have had some PT for remaining (what felt like) tendonitis in that elbow.  Better now, but have a feeling that may still flair up with any repetitive use... we'll see! 

You know you're wired when...

Bad hair days can be blamed on your device shorting out.

Member Quotes

I wouldn't be here if it were not for this amazing technology inside of me.