Question about VTOS and delaying surgery
 

Good morning -
It has been a while since I have spent time on this forum.
I was diagnosed with venous TOS almost two years ago. I got a blood clot after doing too much swimming and it happened in such a short period of time that I didn't want to do the surgery, it just seemed too crazy. I have been managing the pain decently. The thing that works the best for me is deep tissue massage, but if I neglect to go in regularily it can get pretty bad. But lately I am getting frustrated and just wanting to get better and resume my swimming and feel more comfortable at work (I am in front of a computer all day). I am starting to seriously consider the surgery.
I have been researching a bit and wanted to find out if anyone has experience with waiting like this. Is it too late to have success with the surgery if it is done well?
I am also in the Houston area and have seen a few of the doctors listed on this forum - Azizzadeh and Livesay. Azizzadeh wanted to do surgery right away and that scared me off although I would consider going to him if he could do a good job. I liked his support staff a lot. Livesay basically said I would just have to deal with the pain and he could do surgery down the road if I needed it. I am getting ready to see a doctor at Baylor in a few weeks, Dr. West I think as Dr. Kim is leaving. I am weighing Baylor vs. Azizzadeh and wondered if anyone had any thoughts.

I think if it is clearly a vein or artery compression causing most of the trouble , there is a better chance of a good recovery, with a very good surgeon of course.
Nerves are trickier as they complain much longer even with a successful surgery.

Your computer use & swimming are kind of a double whammy for possible ongoing issues, even if surgery is totally successful.
Certain activities & postures can aggravate the same scenario that caused the problem of TOS in the first place..
It might be wise to look for other less arm/shoulder based activities /sports for fun and fitness.

It is always better to have the surgery to avoid future blood clots. As far as change of recovery, everything is very tricky and the results vary a lot.

I'm 6 months out of the second surgery for A/VTOS and still have pain but I was a pretty severe case.

Delaying surgery might mean more vein damage (which means a higher risk of clots and minor disability) and greater nerve damage, especially if you keep swimming.

Your vein might still be salvageable. . . .

Have you thought of going to Dallas for a consult?

I have thought about going to Dallas, are you referring to Dr. Pearl? I know that he has been mentioned a lot here. I am going to some doctors in Houston for now to get a Dopler and probably a venogram. I'll see what he has to say and if surgery looks necessary I could still go up to Dallas.
I haven't been swimming in a long time - about 2.5 years - with one exception. I tried this past winter and couldn't complete a 100 without my arm turning blue. I was swimming freestyle so I likely get compression in some position there. I would like a venogram to confirm which positions are culprits.
Anyway, thanks for the advice re Dallas, I have heard good things and it is just too close to not consider it.

Hi saracb, I was wondering if you have an update since your last post. I feel like we're in a similar boat and had a few questions:

-How were you were diagnosed with VTOS - was it clinically? If so, is the venogram just to confirm the diagnosis?
-Did you end up getting a venogram?
-Has your doctor recommended any other tests (i.e. IVUS, MRA, etc.)?
-Has any doctor spoken about risks of waiting (i.e. if the vein would get more damaged, less chance of surgery success, etc.) vs the risk of surgery (i.e. can you develop nerve symptoms from scar tissue?)? It seems like they have differing opinions - some don't see a problem with waiting (more about how you feel on a daily basis and what point do you want to take that step).
-Do you have any nerve symptoms?

I can definitely understand your frustration. Surgery certainly feels like a big step (the recovery, how much better am I going to get, will it re-occur, will I need more surgery), but there are days when I really just want to feel better and not think about it anymore. I sincerely hope you will find the right path for you to get better so you can get back to swimming and live your life 100%!

I had subclavian DVT in November 2013. Since then I am on blood thinners (first Warfarin, now Xalerto).

I did MRI and Venogram and I got diagnosed with VTOS. Significant compression when I rise my hands - on both sides. Blood flow almost stops.
Now I am still balancing my options.
My vein is damaged, but it is patent (about 50%). I have a lot of developed collaterals around the vein. I don't have any pain. My arm is totally fine 95% of time. Only time when I have problem is if I try to do weigh exercise. I run, walk, type and have zero problems with that. Affected arm does look from time to time more coloured.

My surgeon thinks there is no issue with waiting as long as I am on blood thinners. Since I switched to Xalerto it is so convenient - take a pill once per day and that's it. I cut my self a few times, no issues. Press and it was fine. Surgeon actually told me it might be even beneficial sometimes to wait after DVT as collaterals might further develop.

So it is a hard one for me. I practically have zero issues (no pain or discomfort), xalerto is so convenient (I can eat what i want, no testing, no other issues thanks God..)... still surgeon thinks I have 3 options:

1. stay on blood thinners, without surgery
2. stop taking blood thinner, without surgery and see what happens
3. do the surgery

All 3 options do have risks. I might decide in next few months. Although it has been almost 2 years of this journey I am still not decided what to do, neither are my surgeon or my haematologist.

Thanks for sharing Simurgh. It's rare to hear from others with VTOS, so I appreciate it very much. :hug: Also helpful to hear what other doctors think. It seems some want to immediately do surgery, whereas others think it's fine (perhaps even better) to wait. Has your doctor mentioned anything about further damaging the vein by not doing surgery? Is he/she fine with you exercising as long as you feel comfortable?

If you take either option 1 or 2, you might not even keep that 50%. You are likely continuing to damage the vein, especially if you are doing overhead movements. I couldn't get the surgery until a year after my clot. I almost never raised my hands and my subclavian is still trashed. There's no flow at all across the distal section. They couldn't even open much of it via venoplasty.

Smuts - why wasn't the vein repaired or grafted during the rib removal surgery?

Hi Smuts,

Yes. That's what I was thinking, but then my surgeon told me about the collaterals and how sometimes they can develop to the extend to take the most job onto themselves. Nevertheless I think the surgery (if no complications) is the best way to go. My surgeon doesn't like to do it from armpit. He says it is clearer if you do the surgery 'from above' what is causing the compression. I am a bit concern about nerves going on in there - phrenic nerve, branchial, etc.. I don't like the risk of permanent damage that would affects lungs or arm. My surgeon did over 100 surgeries of this type. I suppose that's not a great number but in UK it is more than most.

How is your recovery going? Did you start workouts yet? Any pain, discomfort, issues, problems? How is you sleeping - I am a side sleeper.

Of course it is very hard to predict, but do you think that 3 weeks after the surgery I would be able to go back to work - I work in the office, but I don't need to use laptop all the time and I do move a lot - I do teaching.

Repair is venoplasty. That's done later, after surgery.

Corpse vein grafting is done primarily if the venoplasty doesn't help and the collaterals are insufficient for whatever. It's a little risky and doesn't always take. . . . My collaterals hold up pretty well. I have the option of doing another round of venoplasty if I want. And then we could consider grafting if I really needed it.

I'm too old to be a professional athlete, but I don't think I'd have a problem right now if I was. My collaterals are doing a good job. I've been doing some lifting. I'll try to drive my arm to total failure in a few weeks to see if there is much of a difference. I doubt that I'll notice anything that needs to be improved.

What risk is there to the vein grafting? What do you mean it doesn't always take?

Hi, I've been recently diagnosed with VTOS. I am currently on lovenox and am symptom free most of the time. I'm trying to decide between staying on blood thinners long term and doing the surgery to avoid further clotting issues and damaging my subclavian beyond repair.

Did you end up doing the surgery, and if so are you glad you made that decision?

Thanks so much!

I've got thrombosis in Nov 2013 and was diagonised with vTOS. Since then I am on blood thinners (first Warfarin and now Xalerto). I rarely have any symptoms.

I was deciding regarding the surgery myself. At the moment I am inclined to wait. That was also the suggestion from experienced TOS surgeon I believe. His rational is that even by doing the surgery there is no guarantee I wont reclot as the vein is damaged and even without mechanical pressure it can potentially reclot. The other thing is that I have developed a lot of collaterals which are helping the main (subclavian) vein. Even if I reclot I have a backup in these collaterals. By doing the surgery there is a risk of these fine veins being damages so I am back to only the main subclavian. He also predicts around 10% of reclotting if I take myself of blood thinners. At the moment (thank God) Xalerto has been great (no issues, very convenient drug) and I dont think I'll be doing the surgery anytime soon.

That's only my input.. :) Some people prefer the surgery which is potentially a long term solution. Great thing yours is probably only vTOS not nTOS so even if you do the surgery it should be quicker recovery.

Good luck!

Thanks for your reply Simurgh.

I think I am going to spend a little more time weighing the options. Right now, I am completely symptom free besides the multiple bruises from my Lovenox 2x daily injections. I am going to look into an oral option for blood thinner.

I'm also going to start working out again to see if my body will tolerate that.

Best of luck to you!

Sorry for being away for so long, but I thought I should give an update since I started this thread a while ago.
I have still not opted for surgery. I ended up seeing some doctors in Houston and had another doppler with them. They said the surgery was an option but if I could manage it conservatively that was better. I did not have a venogram.
Since then I have done some ART which helped in the beginning for a few months. I think it was good but it wasn't permanent for me.
I get massage sometimes. But I mostly started doing some stretching and work on posture especially while sitting.
I don't swim anymore and probably won't again unless I can figure something else out. I am averse to the surgery as I am able to carry on with pretty much everything - except for swimming and playing violin.
Also, I never went on blood thinners as the clot was caught too late to do that. I have collaterals and dopplers have shown that I have some blood flow just not as much as on the other side.
Good luck to everyone -