Hi All. New here and have a question or two for all you with TOS experience. After FINALLY being diagnosed with TOS I am scheduled for surgery April 10th. The doc says that that they are not going to fix the subclavian vein as it is compressed beyond repair. There was not clot. Good news is that I have developed numerous collateral veins to assist in circulation. They are going to remove my first rib and resect the anterior scalenes. But, I am wondering if this is even going to help. I just can't understand why they can't repair the portion of vein that is damaged. I suppose they are doing all this the just make more room for the collateral veins. Either way, I just want this over with. 7 weeks out of work and looks like at least 7 more. Too much time to sit around and stew about this. Any words of wisdom are appreciated. Thanks.

I had surgery in Oct 2012 for VTOS, my subclavian vein was replaced with a frozen donor vein. My circulation improved immediately, I would question your Dr about not having a vein replaced.

Also, my vein was occluded with no clot.

Regis

Was it clearly established from imaging that the ant scalene & rib were what caused the vein damage?

If so then addressing those structures will reduce ongoing crowding in the area.

Please be sure you have the best surgeon you can get, just to be sure you have the best outcome possible.

Thanks for the replies. The surgeon did not specifically say what was compressing the vein. She saw where it was (as did I) and stated it was right there where the first rib and scalenes were. I did ask her why they could not bypass the vein, and her answer was something to the effect that too many collateral veins had formed. She stated that the decompression should allow more room for the collaterals. My concern is that if they can't fix the vein (according to her) why am I going to go through this surgery. Almost seems like PT/OT and cortisone injections would relieve the pressure. Maybe I'm wrong.

Oh, and did I mention that I am completely terrified??!!

Usually they remove expendable structures to give more room, sometimes PT just can't do it ( or it may take years & extreme dedication/focus to see the results from it).

Do you know how you might have acquired TOS?

Being a long time firefighter? that could do it, or any injury from the past could factor in too. Sometimes internal scar tissues/adhesions form in the in the areas of past injuries.

You can use the search link or explore other posts here for more surgery information.

One good question to ask is how many of these has surgeon done , like per year or such.. Basically you don't want someone practicing on you.
In case they get in and find more issues than imaging can show. They need to have the experience /skills to fix any surprises.

Well, she said (as well as the doc that did the venogram) that this was chronic and had developed over many years. First, I am a pretty small guy. I have learned to adapt and compensate upper body strength using less that perfect body mechanics especially when I was working as a FF/EMT. Second, I was a scuba instructor for 10 years. That's ten years of breathing through my mouth (using the accessory scalene muscles) and vigorously swimming all day every day. Couple that with a lot of computer use and poor posture. Then, I did some heavy yard work in which I pulled (bad idea) a very heavy trash can behind me. The next day, I pulled a patient up out of bed incorrectly and then after that went to the shooting range and beat the crap out of my shoulder shooting a rifle. 2 days after that is when the symptoms got bad. One doc initially diagnosed me with tendonitis in the scapula region and swelling of the bursa under the collar bone (coincidently right near the brachial plexus).

BTW Jo*Mar....... My surgeon has done NONE since getting out of residency. She said she did a lot in training though. The brighter side is that the head thoracic surgeon will be co-piloting this procedure.

well, as long as the head t surg is in the room during the op all should be good.
He will take over if needed I hope..

All this after reading about PE's, pneumothorax, nerve damage, chest tubes, etc.

Maybe I could just learn to be left handed. Scared would be an understatement at this point.