[Simurgh]

Hi to you all, good people

I am at the point where I need to make a decision for or against the bilateral surgery(s) for venous TOS.

Here is my story.

I never had any problems with my arms, shoulders or neck - no pain, no discomfort, nothing. Last year I was exercising more than normal - particularly I was running quite frequently - pretty much every day for 1h.

After a few months of running I start to experience some shoulder pain but nothing serious. Then all of the sudden one night I woke up with swollen arm and went to A&E. I was diagnosed with subclavian vein DVT. I was put on warfarin (heparin for a few days) and sent home.

For a next few months I did a bunch of blood test and they all came normal. In the meantime my arm gone back to normal - both in appearance and colour and I don't have any pain or discomfort.

Finally I did MRI scan of my neck and shoulder area. On scan report, they said they can see significant vein narrowing in stress position (arms up). No cervical rib, no fibrous band. Arteries are fine, no compression. A few more months have passed and I finally saw a vascular surgeon.

He told me that according to MRI scan I have a significant compression of veins on both sides between first rib and clavicle. He offered me a surgery. The main reason for surgery is the fact I got DVT and they can see narrowing on both sides (although, radiologist wasn't sure if the narrowing is significant enough to cause toracic outlet syndrome). He said they would remove the part of the first rib and muscle to decompress the passage. Although he recommends the surgery, he said the decision is on me. Surgery in itself brings some risks.

I am still taking anti-coagulant (not warfarin, but xalerto). Much more convenient than warfarin.

I have no idea how to make my decision. I definitely don't want to be restricted all my life for not doing any physical activity although I can live without weight lifting. I am 27 healthy male.

I ask them how many surgeries of this type they do and he said they do up to 10 per year as it is quite uncommon problem (I live in London, UK). Is that enough?

Can anyone please give me any advise on this? At the moment I have zero issues - no pain, no discomfort, nothing. I don't mind taking anti-coagulants as I have no restriction in diet and I don't need to be tested. But I don't want to risk to get another clot which might cause much more problems.

Sorry for making it a long story. I suppose I am a bit lost. I wish you all the best to all of you and many thanks in advance.

[Jomar]

Well, it sounds like the extra running might have triggered the clot, so you may have intermittent compressions, more than a constant one. Maybe due to the arm positions during running..

You could work on posture and keeping the chest/shoulders area open for more blood flow.

Since you are on the blood thinner your risk for another clot is lower.

Quite a few with this scenario do decide to wait and see how they do, then surgery is always the option later on if needed.

If you can get some expert PT or expert chiropractic sessions to make sure you get a good start on any posture & body mechanics, and make sure there are no misalignments...

You can search here for VTOS and other posts about it.

[Simurgh]

Dear Jo*mar,

Many thanks for your advice. In my MRI report it says:

"On the coronal images, there is no evidence of a cervical rib. I can see no evidence of fibrous band. The costoclavicular space however on both sides does seem rather narrow. Comparing sagittal images in the arms up and arms down position, there are changes of thrombus within the right subclavian vein. In the stress, arms up position there is significant narrowing of the subclavian vein as it passes through the costoclavicular space. This seems to be the case bilaterally. I think however there is a very thin fat plane around this. I am unsure as to wether this is a simply marked physiological change of if it is significant enough to cause track outlet symptoms. There is, however no evidence of compression of the artery and with contrast both subclavian arteries passing to axillary arteries are normal in appearance. No other significant findings."

I don'w know if somebody has experience and what can I make out of this.
My main concern is that I would go from zero issues to having pains and discomfort due to surgery(s) all my life. But the prospect of having another clot or staying on xalerto for life (and risking bleeding) is not appealing either.

Is it true that VTOS surgeries are more successful in terms of post-op pain? (does it make a difference)?

Does anyone know any good place in UK where can I get another opinion? Should I avoid any(all) physical activities in the meantime (running, swimming, etc...)

Thanks a million!

[husky601]

Simurgh, like Jo*mar said you have to work on your posture. Sounds like you may have a VTOS and it is a mechanical problem. I will suggest you to go take a look on my post about Re education posture global.I will think you have similar symptom than taybm20 with little differant way to get it. Go take a look on her or his post. I believe the R-P-G is the best way to go but i think a good PT or chiropractor who have good skills with TOS will be able to help you.

Alexis

[Simurgh]

Dear Alexis,

Many thanks for your reply. This is a great help for me.

I don't actually have any symptoms apart from DVT that I had almost a year ago. I don't have any pain or discomfort. My vein is fully opened. Regardless the vascular surgeon I saw suggest I do the surgery and remove the first rib on both sides.

Can you please explain (or refer me) what R-P-G is?

Even if I do something apart from surgery I don't know does it do anything as I don't have any pain, so I don't know if there is any improvement...

I am stuck on decision whether to go with 2 surgeries or not as I don't have any problems.

[husky601]

RPG is Re education posture global. At the begining my symptoms where verry little and i had no pain but my arms where getting tired really fast when i was working with my arms above my shoulders. If i was holding my phone to talk my shoulder was getting tired pretty quick to but i had no pain. Do you feel something similar sometime? I did write a post about RPG, it's not good only for TOS but for everyone even for peapole who dosen`t have problem.

Alexis

[Simurgh]

Originally Posted by husky601

RPG is Re education posture global. At the begining my symptoms where verry little and i had no pain but my arms where getting tired really fast when i was working with my arms above my shoulders. If i was holding my phone to talk my shoulder was getting tired pretty quick to but i had no pain. Do you feel something similar sometime? I did write a post about RPG, it's not good only for TOS but for everyone even for peapole who dosen`t have problem.

Alexis

I normally don't have any symptoms apart from some shoulder pain if I run for more than 30min. Sometimes I get some arm discomfort but very mild.

Do you know if I can find more info about this treatment in UK (or ideally London)?

Hm... still don't know what to do about the surgery...

[husky601]

Here is a link, http://www.spinecor.com/default.aspx?pageid=1797 Spinal Correction Clinic, 10 Harley Street London, W1G 9PF but if it's not near to your place you shuld call the treatment center in UK and ask them if there is other closer to your place.

About your condition i don't want to tell you much more because i am not an expert and to much people think on differant way here in this forum and sometime something works great for someone and with the exact same treatment other get worse and it could be quick just like it was for me. Fortunatly i fond the good thing to do after!!!

I can tell you when i was doing lots of cardio i had pain because apparently my thoracic cage was moving up slowly and it's was pinching everything between my colar bone and my first rib. But it was for any kind of cardio, running, biking, rollerblading and more... Also the vibration was giving me hard time but again i don't know for you...

If you want send me a PM and i will give you my breathing exercises because i am 100% sure it could not make your condition worse and i think it could be good for you to see if you can see a differance or not. If it's does something it's gonna be a good indicator. For the rest of my exercises i think it will be safer to see an expert before to ask them what they think about them.

Alexis

[JennyH]

Hi.
It's a hard decision to make about surgery - I had mine at Guys and St Thomas' 6 years ago for arterial and neuro TOS but now have venous TOS and am having to make some big decisions too.
Where are you being seen in UK? You definitely want to be seen at one of the major centres. Have you only had the MRI or have you had any dynamic tests where they can see what happens immediately when your arm is in different positions like a venogram or something similar? From the MRI it seems like they can't be sure how significant the anatomical changes are so it probably might make sense to do some kind of functional test.
Might also be worth checking out the TOS facebook page - after 7 years, I only found it a few weeks ago and it's useful for getting feedback. Quite a few people from UK on it as well
Good luck with your decisions!
Jenny

[Simurgh]

Originally Posted by JennyH

Hi.
It's a hard decision to make about surgery - I had mine at Guys and St Thomas' 6 years ago for arterial and neuro TOS but now have venous TOS and am having to make some big decisions too.
Where are you being seen in UK? You definitely want to be seen at one of the major centres. Have you only had the MRI or have you had any dynamic tests where they can see what happens immediately when your arm is in different positions like a venogram or something similar? From the MRI it seems like they can't be sure how significant the anatomical changes are so it probably might make sense to do some kind of functional test.
Might also be worth checking out the TOS facebook page - after 7 years, I only found it a few weeks ago and it's useful for getting feedback. Quite a few people from UK on it as well
Good luck with your decisions!
Jenny

Dear Jenny,

Thank you so much for your input. I am being seen in Royal London Hospital. The vascular surgeon has said to me that they do up to 10 of these surgeries per year and that is quite rare. I don't know if that is too low.

So far I did MRI with dye injected and they did two positions - arms up and arms down. That's all. Should I request more? What kind of tests can I do - what should I do... They said if I never had DVT they would not treat it regardless that they can see some vein narrowing in stress position.

It would be of a huge help if you can tell me more about the places in UK where they deal with vTOS. How happy are you with your treatment at St Thomas? Do they have someone with the bigger experience there? Are you aware of any other places in UK where might be a good idea to seek 2nd opinion (on NHS or private).

Also if you don't mind me asking. What kind of the surgery you did the first time (rib resection?). How come that you need another one?

Once again thank you so much!