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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
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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!