Anyone here ever had subclavian vein bypass before? How much vein did you have bypassed and how successful has it been for you?

Thanks everyone.

hi
not had it done but about to see surgeons on Tusday to discuss it so would be very interested in anyone's experience. What have they discussed with you as an option?
There was one person in New Zealand who had had a jugular vein turndown and she seemed to be doing ok immediately post op but not seen her on here since. What's your situation? I've previously had arterial and neurogenic TOS - first rib resection back in 2008 and now have venous TOS...
Jenny

Hi JennyH,

I haven't had my first rib removed. I had thrombolysis and angioplasty. The venogram showed a lot of vein scaring. My vein closed back up after a few days. It did seem to help my collateral veins. I had some collateral veins that were having issues. I've only been diagnosed with venous TOS or Paget-Schroetter syndrome. My vascular surgeon talked of the next step of having a vein bypass with a vein out of my leg along with the first rib removal. He said it was very uncertain surgery and he didn't recommend it at this point. I do have some weakness in my arm and some periodic tingling. I generally don't use my left arm very much. He told me that he's had one patent that the operation failed on and there really isn't very many case studies that indicate how successful the operation may be. We did talk about Dr. Thompson and I have read that Thompson uses larger veins from donors that they keep frozen for just this type of surgery.

I did find this article about a Dr. Thompson patient that the bypass failed on and he is just living with it and his colletarls are working for him.

*edit*

Right now, I plan on getting as healthy as possible and see how I do for a while. I have to take anticoagulants for at least a year, maybe for life. Feel free to ask any questions you have. Thanks for your response.

Hi, I didn't have a bypass. I had massive blood clot several years ago. My TOS is because of a broken collarbone and hardware that was put in. They did put a stent in because the vein was so damaged but of course that broke. The arm is pretty functional. It gets tired quickly. I have massive pain often but that is from the nerves not the vein. I work at a desk. I even go to the gym but I use machines for weight training. The bloodflow is low in the area but the collaterals have taken over a lot. Not sure if this helps you but for me the vein isn't bothersome it is the nerve pain.

Thanks eveewonder

I appreciate the response. I'm pretty much in the same position. You had your collarbone fixed and I didn't. Both ended up doing the same thing. Causing compression in that area. I have very large arms and shoulders. My arm is weaker but I can deal with it. I don't have pain that often but Tylenol pretty much takes it away. I do get some discoloration when I use it more than usual but I don't have the swelling I use to have in it. My collaterals have taken over a lot and if I'd lose some weight, I'm sure it would be better. I can say that I scared to try the vein bypass. Go through all the surgery and still have the same issue. I do wear a compression arm sleeve. It helps. I don't get the tight ones. They actually do more harm than good. My vascular surgeon did tell me that a stent was useless in that area. So, I didn't have to go through having to try one. I have read they have some newer, stronger stents coming. Ones made especially for larger veins and are more compression resistant.

Its good to know that, long term, having a occluded vein can be dealt with. I pray you find help with your pain. Thanks for sharing!!! I really appreciate it.

P.S. I have been told that I probably needed to have the mid section of collarbone removed. The ortho that told me that, didn't offer to do it. In fact, he pretty much didn't want to deal with me at all.

I think that is really common with most Drs. It is out of their realm of comfort and knowledge. They don't want to go poking on a patient that has symptoms/conditions they are not used to. They wont usually even touch something they *do* know if its even close to damage from another issue.

My ortho said the damage in my wrist can be fixed but he wont ever touch it due to "all that weird stuff you got going on in there" and pointed to my shoulder. He doubted I would ever find someone willing to go into the morass.

I had the same issue years ago, 15 to be exact. The doctors in my town said they had no idea what to do and after searching I found Dr. Charles Brantigan in Denver and he said no problem and did a jugular turn down to make a new subclavian vein. Works perfect and has for the pst 15 yrs. Not sure where you live but if you can see him. He'll take a look and fix it if he can.

And no, before many say he's retired he is only semi-retired but still doing surgery at University of Colorado in Aurora. Starting up a TOS clinic there.

Thanks zerodgirl!!!