Left arm troubles

Hi All,

I am three years out from my pacer implantation for heart block and artial tachycardia. I got a sharp pain in my left clavicle last summer and was found to have a subclavian dvt. Saw a hematologist for a work up that included a dx of brachial vein stenosis. Was referred to a vascular surgeon who did not endorse any intervention for the vein. My left arm gets really sore and swells and has not improved. Was recently diagnosed with venous insuficiency in the left arm without any interventions or hope for improvement. I am 35 and pretty active but this has really slowed me down. Has anyone else delt with this sort of problem and perhaps have any advice or tips? Many thanks <3

2 Comments

I would ask for another opinion from a different vascular consultant

by Gemita - 2021-04-23 14:47:47

Lily,

I am really sorry about your difficulties.  After my pacemaker implant some three years ago, I developed swelling and pain in various locations (left arm, left side of neck and across my collarbone).  Fortunately I was on anticoagulation for atrial tachyarrhythmias (Flutter and Afib) at the time and over time developed a good collateral circulation (additional veins around the traumatised subclavian vein) to bypass the narrowing/blockage.  

Last year I had a CT scan with contrast and it confirmed that blood was flowing normally again and so no further treatment was needed.  It is not perfect and I am still getting intermittent pain but overall the swelling has gone down and I am able to exercise reasonably well.

I would perhaps ask if you could be referred to another Vascular Surgeon for a second opinion on what could be done to ease your discomfort and venous insufficiency.  Are you on any anticoagulation?  I am on Edoxaban.  I do wish you well.

 

swollen arm

by Julros - 2021-04-23 14:50:40

I am sorry you are having to deal with this. I am not clear about whether the brachial vein stenosis is related to your pacer. As you likely know, the pacing wires are inserted into the subclavian vein and then threaded into your heart. Subclavian vein stenosis is common consequence, but most people have no symptoms. 

I developed arm swelling and a change in color  and daily headaches about 9 months after my implantation. I had two ultrasounds: one was read as thrombosis, and one was read as stenosis. A vascular surgeon reviewed the images and said it was stenosis and I would develop collateral circulation around it. Otherwise there was nothing he could do. Any sort of venoplasty ( ballooning the vein open) would be temporary and could damage the wires. And he said it wasn't that noticable, even though my family and coworkers have remarked on it. And he didn't think it was related to my headaches, even though I have articles that say differently. 

So, yes, I developed collaterat circulation and have visible veins on my shoulder and chest. The daily headaches lasted about 6 months. After a year, my arm is slightly smaller and the ruddiness is not as noticable, but not back to baseline. 

I wore a compression sleeve for a while, with approval from the surgeon and I wonder if that would help your discomfort. Otherwise, I have no advice. But you are not the only one. 

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Yesterday I moved to a new place in my mind and realized how bad I felt 'before' and the difference my pacemaker has made.