Thoracic outlet syndrome

[TJSTICKYBLOOD]

Does anyone here also have thoracic outlet syndrome and if so what are your symptoms please.

[MaryF Administrator]

Hi Tracy, this is quite a good write up: my.clevelandclinic.org/serv... and more detail here: circ.ahajournals.org/conten...

MaryF

[TJSTICKYBLOOD in reply to MaryF]

Thanks Mary I have TOS as one of my diagnosis and strange things have been happening to my hands so was intrigued how other people suffer. Going to have a read of this thankyou x

[TJSTICKYBLOOD in reply to MaryF]

Mary this has answered my question thankyou so much, my hands keep swelling on walking, my APS consultant diagnosed this about two years ago because of the numbness in my hands he did a test which included putting pressure I think it was on my chest or neck and asked if my fingers went numb which they did. This swelling is now a new symptom

[MaryF Administrator in reply to TJSTICKYBLOOD]

Funnily enough mine swelled a lot when walking recently when away travelling, as soon as I sat down, it went away....MaryF

[TJSTICKYBLOOD in reply to MaryF]

That's exactly what happens to me, did they turn a different colour?

[Kentish_Man]

Hi Tracy,

I have just read your original post. I have been having a lot of problems with my hands through Thoracic Outlet Syndrome in the last few months - or at least I think that this is responsible. My hands have been really painful and to such an extent that I could not even put my hands under running water !!

My left hand has all but recovered, whereas my right is still very blotchy and covered in painful lumps.

[TJSTICKYBLOOD]

Thanks for the reply I will speak to my consultant about the hands in June

[Red63]

Hi, I've recently been diagnosed with TOS...and my hands swell up and feel tight when I walk sometimes...then they go back! Also the sides of my neck and face are red...this gets worse if I lean over. I think it's linked to the TOS, a dermatologist said it isn't skin related but then I was left high and dry with no follow up. My GP's are really good with small stuff but not that knowledgable about out of the norm stuff...and they think I am just whinging. My physio isn't helping, private and costing me a fortune! Has anyone had surgery or other treatments?...this is driving me nuts!!! Thanks in advance.

[HollyHeski Administrator]

Hi, I had vascular TOS, just over 10 years ago, the cause was right stenosis of subclavian. They treated by angioplasty, to open up the artery, this failed the 1st time and left me with a blood clot. The 2nd time, they were unable to remove blood clot as it was live under a flap of arterial wall, still have this today, they did manage to open up the artery enough to relieve the symptoms.

For the last 2 years, the symptoms have returned, inside the arteries, both subclavians are now stenoised but the vascular surgeons have decided not enough on their own to cause the problem. I have now been diagnosed with neurogenic TOS, which they think is outside pressure on the nerves in the thoratic area, I also have a crumbling nect at C1/2 & C5/6.

I take low dose naltrexone for the pain and undertaking physio and maybe acupuncture down the line. I will send you a link for a very comprehensive paper.

[HollyHeski Administrator]

emedicine.medscape.com/arti...

[Red63]

Thanks HollyHeski 😊 I'm kinda floating about in the dark with this. I had an accident a long time ago, extreme whiplash...undiagnosed TBI and various other bits and pieces. I've managed everything for years myself (expensive) but now I'm in my 50's things are just stacking up. I have Red Ear Syndrome that is linked to cervical damage and balance issues linked to the TBI but all the little bits are not considered life threatening and are therefore left...problem is they're life limiting and exhausting. I will go read the article...again thanks. Lovely dog btw!

[TJSTICKYBLOOD]

Interesting I had a whip lash injury so is it the Hughes or the whiplash or both??

[HollyHeski Administrator in reply to TJSTICKYBLOOD]

Probably both but they have linked APS to TOS now as well. The doctors have moved forward regarding TOS in the last 10 years, I went through a lot of tests and negative reports from them 10 years ago, I didnt have an extra rib so was treated as if it was all in my mind - fortuantly whilst doing one test they found reversed blood flow in my verticle artery, proving my symptoms.

How are you now, as your original post was 2 years ago - what has helped you?