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.

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...

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

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!