More than happy to help, just wish i could be more active but work commitments take up basically all my time!
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@LimeZest ok yeah that makes a lot of sense. It’s hard to know at the minute since I’ve not had a lot of the investigations done related to these sort of issues as I only came across them a couple of weeks ago. At least now I have a clearer path to getting a diagnosis so I appreciate the help!
Who did you go to regarding TOS i.e. what kind of doctor/specialist etc.?
Yes and just one other word of advice is that there is a lot online about CCI from certain sources who will want you to believe thats the cause of the problem - but there are so many overlaps with other conditions such as ES and TOS. But because of the pay to play system particularly in the US these are the guys who have youtube videos left right and centre and frankly play a bit into the fear mongering. So really try to be as rational as possible when looking at everything and be sceptical about where the info is coming from - in the beginning for me, even though im a scientist, fear was a big driver but stops you from being rational about everything.
For TOS actually my NHS physio suggested it could be something to look into, so she wrote that into my notes and my GP referred me to vascular. They organised an ultrasound which i had last October, and only now got the follow up appointment on 1st April.
There is this TOS centre of excellence in Bristol - guy called Rob Patterson i think who is a private phsyio that pops up a lot. But my advice would be if you get a private CTV done, see if you can get it done from the first rib up, so you can image the jugular vein and subclavian vein at once. Even if its neurogenic TOS, mild compression of the vasculature under the clavicle is indicative of the brachial plexus being squashed too.
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This post is really helpful for seeing some of the vagus nerve related symptoms it’s possible to get:
Successful Surgery for severe Vagus Nerve Compression - General / Eagle Syndrome Stories - Living with Eagle
There’s also a brief bit of info about CCI:
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Hey, I sent you a message