Living with venous TOS without surgery?
 

Has anyone tried living with venous TOS without a surgery for it? I am interested in hearing from you, what your experience is like. I have had one blood clot presumably as a direct result of venous TOS and doctors kind of think I will have more clots unless I stay on blood thinners for life. My other choice is to opt for first rib resection surgery. They think my right subclavian vein has an external compression at first rib and costoclavicular ligament. Can anyone relate to this? I am only 7 mos post-clot but there is concern the vein, which was completely occluded until they busted out the clot and ballooned it, will re-occlude. Can a person live like that even so? I have some collaterals. Am just wondering if anyone has a similar experience.

Yes you can live without surgery as I did for 45 years, I was in constant pain and discomfort all the time. On Oct 4th Dr Thompson removed my first rib, scalene muscles and did a vein implant to replace my occluded subclavian vein. The recovery was difficult but I feel much better now than before the surgery. I fully expect to be 100% within a year.

All I can say is surgery will be well worth it if your Dr has the same level of expertise that Dr Thompson in St Louis has, or have it done in St Louis.

Regis

I have discomfort but not pain and they are willing to operate
 

Thank you Onelessrib, I am glad to have opportunity to learn from your story
I just wonder if I don't have pain now at 6 mos, does that bode well for not having pain in a year or two or longer. I don't understand how I can have a problem so extensive that they are willing to operate on me, but yet I don't have very many symptoms. It varies from day-to-day, but compared with what I see most people with TOS posting, I can't even call what I have pain.

Odd sensations and discomfort, sometimes. So I'm thinking, how is surgery justified in this case? Unless they think I'm going to be in way worse shape should my vein shut down? Does anyone know? It's a little frustrating because I can't find information on this. Virtually everyone posting online seems to have the pain that accompanies the neurogenic form of TOS.

It is uncomfortable for me to type for long periods, but once I get up and away from using a computer, I feel pretty okay. So all I know is they think I have venous TOS but they don't think it's the cause of the tingling in my arms and the other minor symptoms. Surgery just sounds like a really extreme solution at this point, for a problem that I can't even see the extent of it.

What I was told was that I could choose to not have surgery but if there is any vein or artery involvement that I'm just a ticking time bomb for a clot to be thrown and potentially cause problems like stroke or pulmonary embolism since I did not respond to PT. I was also told that nerve damage, the longer it has been compressed, the more permanent it becomes. There's also the concern if there is vessel involvement that you end up with gangrene and risk limb loss. I've heard that some people are able to live a long time without surgery but, personally, since PT did not work I'm not willing to take the risk of NOT having surgery. It's definitely at least something to talk to your doctor about.

When I first went to see Dr. Thompson for an evaluation last February, he said that usually if there is vascular involvement, it really is best to get it surgically repaired. I had an aneurysm in my subclavian artery, and he said that it would likely cause problems over time (clots, etc.), so he recommended surgery. I had the artery repaired in June and got my first rib and cervical rib and two scalene muscles also removed during the same surgery. The recovery was rough early on, but now I'm doing great and am relieved to have it behind me. I'm fortunate to only live 4-5 hours from St. Louis, so it wasn't too hard for me. I know it's a lot more difficult if you're farther away, but if there is any way you can get to there to see Dr. Thompson, I would really recommend it.

yep-ive been living with it
 

Yes, I have c-ribs and TOS and had one resection and have needed one more for a few years now but put it off because healing was brutal for me.
I have been made aware that I run a great risk of clotting, I live carefully hoping to avoid it...its so hard to decide about another surgery.
I'm on the fence-so tough. Be really careful and dont take my choice as advice...it is a great risk, clotting is life threatening.

Thanks
 

Thanks. Had already decided to proceed with surgery before seeing your post. I am aware of clotting risks and in fact that is my motivator. Hope you take care of yourself and find out what is right to do in your case.

Starfish,

Your descriptions sound similar to what I went through before I opted for surgery for arterial TOS. I am six months post op and glad I did it. My arm feels so much better and alive. I had surgery for severe nTOS on the other side eight years ago and yes, the symptoms are different. That time, the pain was horrible, my hand had clawed up, the hand and forearm had significant atrophy, etc. The same surgeon did both sides.

From my own experience, you may not realize the full extent of symptoms you are dealing with as you're dealing with the stuff on a day-to-day basis. They originally diagnosed me 4 years ago but said it was my decision when and if I opted for surgery. I eventually returned due to the progression of symptoms. What I didn't expect was the vascular conditions (impact on the artery and vein) to worsen so severely.

Thank you for this reply. I decided last month that I would make it a goal of 2013 to have surgery for VTOS. I am hoping my neuro issues are minor if they are part of this. It's nice to know there are others out there like me.