[Simurgh]

As I was writing on the other threads I have a decision to make.

Does anyone here have the experience with the surgeons in UK? Anyone did the surgery for vTOS in UK?

I am in London and have been seen in Royal London Hospital. They don't do high volume of these operations there (up to 10 per year).

Any suggestions where should I seek 2nd opinion and if I choose to do the surgery where to do it?

THANKS!

[jonesyh]

Originally Posted by Simurgh

As I was writing on the other threads I have a decision to make.

Does anyone here have the experience with the surgeons in UK? Anyone did the surgery for vTOS in UK?

I am in London and have been seen in Royal London Hospital. They don't do high volume of these operations there (up to 10 per year).

Any suggestions where should I seek 2nd opinion and if I choose to do the surgery where to do it?

THANKS!

Hi,

Have had 1st rib resection on the right arm in April this year, having my left arm done in 2 weeks time.

Both surgeries at Exeter hospital, surgery performed by John Thompson.
Initially saw him privately for consultation and diagnosis, surgery and following care on the NHS. AFAIK John 'teaches' the operation in the UK, so is probably the best for the job.
**

Hope that helps! feel free to PM me if you need more info.

Thanks
Jonesy

[Simurgh]

Dear jonesyh,

Thank you so much for your post. I would definitely like to know more about the surgery and your experience and also what did you do before the surgery...

I sent you message via email **.

I wish you all the best!

[jonesyh]

Originally Posted by Simurgh

Dear jonesyh,

Thank you so much for your post. I would definitely like to know more about the surgery and your experience and also what did you do before the surgery...

I sent you message via email (as you need to have 5 posts before I can PM you).

I wish you all the best!

Hi Simurgh,

** Didn't see a mail from you but sent me a PM and I'll help where I can.

Cheers

J

[Simurgh]

Dear jonesyh,

Many thanks for your posts. Did you see any other surgeons before seeing Dr John Thompson?
How did you find about him - is he the specialist in TOS? Do you know how many surgeries of this type he did? I was advised that it is very important to find the experienced surgeon. Is he the best (among the best in UK)?

I was thinking to arrange the appointment with him privately and then if I decide for the surgery to do it though NHS.

What was your experience with him throughout the process? Do you have any side effects of the surgery now?

The thing is that I don't have any symptoms or problems, but they still advise me to do the surgery because I had DVT. It's a hard decision as I could be trading possible risk of developing another clot to possible complications and pains after the op. They said my arteries are not affected and it is not the clearest result regarding the veins (but as I got DVT it's probably it).

Any suggestions - anything I should seek for or ask...

Thank you so much!

[JennyH]

Hi
I'm going to reply to this thread rather than one of your other ones...
Thoracic outlet syndrome is rare and getting the best treatment is harder than in the US where most people seem to be able to get to see someone specific. The Royal London is a good hospital and 10/year is actually a lot for UK.
I had my original surgery at Guys and St Thomas' with someone called Prof Burnand, a vascular surgeon who has now retired. If you search the forum, you'll find old posts from me in 2008 all about it but basically had arterial and neurogenic TOS so had to go ahead with surgery as no pulse in left arm. Unfortunately 6 years down the line, I have now developed venous TOS probably due to more scar tissue and that's why I now need to look at more surgery. Because I've already had my first rib removed and because such a long stretch of vein is damaged, my case is now very complicated. It's been discussed in both Cambridge (where I'm now based) and in London but none of the vascular surgeons are keen on operating because I've already had the normal first rib resection. Eventually the decisoin has been made to refer me jointly to Professor Julian Scott and PRofessor Simon Kay (they did UK first hand transplant so not TOS specialists but would be prepared to operatie in my unusual situation where they will hopefully try to disentangle scar tissue from my brachial plexus as well as deal with the vein).
However, for a first presentation of TOS and for someone London based (I'm guessing you must be or otherwise in the area served by Royal London) the two hospitals that my case was discussed with again this time are:
Guys and St Thomas' still has a specialist vascular service for TOS http://www.guysandstthomas.nhs.uk/ou...ecialties.aspx but one of the best units in London geared up for this is at St George's. They have specialist service dealing with upper limb DVT and then TOS surgery so I think you should at least explore their opinion. I've heard good things about Mr Ian Loftus https://www.stgeorges.nhs.uk/people/mr-ian-loftus/ who I suspect you'll find will also give you a private opinion.
https://www.stgeorges.nhs.uk/service...tlet-syndrome/
Hope this helps
Jenny
PS would check out FB page too if you are on FB as may get other recommendations

[JennyH]

PS if you search the Archive, there's a thread from a while ago called UK TOSers? which lists specialists TOS in UK too

[Simurgh]

Dear Jenny,

This is great. Thank you so much!

I hope your situation resolves soon. I am sure it will be fine at the end.. Keep us updated!

All the best!