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Chronic pain

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Original poster

Anyone else suffering from Thoracic Outlet Syndrome?

99 replies

toodizzyizzy · 18/07/2021 17:57

I'm finding the isolation hard as no one has ever heard of it and I'm suffering badly whilst waiting for an urgent opening (terrified of delays caused by recent covid wave). I'm really curious to know if there is anyone out there in the same situation?

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Original poster

toodizzyizzy · 18/07/2021 17:58

I mean operation, not opening - drugs are as bad as the pain!

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YellowSunshineSky · 06/08/2021 11:02

I’m currently trying to work out if my arm problems are caused by TOC or nerve impingement in my neck.

How did you get a diagnosis?

Original poster

toodizzyizzy · 07/08/2021 18:57

It took about 2 years to get the diagnosis, it was the MRI scan though that confirmed it. What tests have you had done? I believe it is a difficult condition to diagnose and incredibly painful. Do you get pins and needles when you lift your arm? That seemed to be the the one symptom that got the consultants attention

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YellowSunshineSky · 09/08/2021 23:01

Which body part do they scan in the MRI?

I've had pins and needles in my hand and hand swelling. When I lift my arms for 30 seconds they ache like I've done a three hour arm workout, and my arms feel weak. It used to be just one arm, now it's both.

I'm not in lots of pain though.

YellowSunshineSky · 09/08/2021 23:02

Did your operation help?

EverybodyKeepCool · 09/08/2021 23:11

My son has just been diagnosed with this! He's on the list for surgery but frustratingly if he had been diagnosed earlier then physio could well have eased it to the point of no longer needing surgery. He had an MRI and a duplex scan to confirm diagnosis.

Original poster

toodizzyizzy · 10/08/2021 00:41

The MRI specifically scanned under my arm, that's where the 'thoracic outlet' is between the collarbone and first rib. The pain started as a tight gripping pain in my lower arm and spread upwards. I can't lift my arm for very long at all, it's just so weak. Its taken a long time to diagnose as I believe it's quite rare. I had a good consultant. Have you seen anyone at the hospital yet? How did the pain start? For me it was after an accident. My operation got cancelled, I'm absolutely gutted - I'm still waiting to hear when it will be rescheduled

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Original poster

toodizzyizzy · 10/08/2021 00:47

Sorry to hear about your son Everybody Keep Cool - it's very frustrating as it should be treatable with physiotherapy. It sounds like the diagnosis came too late for both of us! I hope his surgery can come soon to help relieve his symptoms

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YellowSunshineSky · 12/08/2021 09:11

Sorry to hear that your operation was cancelled, I hope it's rescheduled soon.

My arm problems have been gradual, though when I look back I've had back problems triggered by arm movements since I was a teen which may or may not be related.

My GP has referred me to a physio for a spinal assessment.

I'm considering a private assessment with a PT who specialises in diagnosing TOS, even though he's a long drive from me.

In case anyone reading this thread needs the info he's called Rob Patterson and is at The Cherrington in Bristol. He comes highly recommended by people in the UK TOS Facebook group.

Original poster

toodizzyizzy · 12/08/2021 19:54

@YellowSunshineSky

Sorry to hear that your operation was cancelled, I hope it's rescheduled soon.

My arm problems have been gradual, though when I look back I've had back problems triggered by arm movements since I was a teen which may or may not be related.

My GP has referred me to a physio for a spinal assessment.

I'm considering a private assessment with a PT who specialises in diagnosing TOS, even though he's a long drive from me.

In case anyone reading this thread needs the info he's called Rob Patterson and is at The Cherrington in Bristol. He comes highly recommended by people in the UK TOS Facebook group.

I've read about The Cherrington and would've gone there myself has it not been so far to travel (I live in the NW and can't drive). Some people can have TOS because they have an extra rib, have you had an x-ray to check for that? If you can diagnosed early enough you can avoid the surgical route which I'm now on. I'll be interested to know how you get on.

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YellowSunshineSky · 13/08/2021 15:56

I haven't had an X-ray, when I spoke to the dr recently she just referred me to a physio for a spinal assessment.

I'm hoping that Rob can either diagnose TOS or rule it out.

I can't see him for a few weeks as work is too busy, but when I do see him I'll come back here and update.

Any news on when your op will be?

Original poster

toodizzyizzy · 13/08/2021 17:02

That would be good to hear how you get on, it will be worth a few weeks wait to get peace of mind. It took me 2 years to get diagnosed on the NHS. In hindsight I wish I'd gone privately, but I'd never been heard of TOS until this year. It's looking like my operation will be next Thursday (19th). I'll let you know how it goes

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Magpiecomplex · 13/08/2021 17:07

Mine was diagnosed as soon as I walked through the rheumatologist's door! No extra rib here, just (!) 36JJs and hypermobility... He offered me a referral for a breast reduction on the spot, which like a fool I refused.

Original poster

toodizzyizzy · 13/08/2021 18:21

Was your treated with physiotherapy alone? It sounds like you had a good rheumatologist ☺️

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Original poster

toodizzyizzy · 13/08/2021 18:23

I mean was your 'condition' treated with physiotherapy... I'm genuinely interested to hear other people's experiences

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Magpiecomplex · 13/08/2021 22:10

I didn't get a formal physio referral but the rheumy gave me a load of tips on how to manage it, which has been enough, most of the time. I have to be careful with rucksacks, otherwise I end up with dead arms, but other than that it's manageable. I really need to lose enough weight to chase up the breast reduction though.

Magpiecomplex · 13/08/2021 22:13

And yes, he was an excellent rheumatologist! Can't remember his name, alas. Fortunately for me, my GP, after diagnosing me with both tennis elbow AND golfer's elbow simultaneously, realised he was out of his depth and happily packed me off to be someone else's problem.

Original poster

toodizzyizzy · 13/08/2021 23:14

Good to hear that you are finding the condition manageable, it goes to show what a big difference a knowledgeable clinician can make! For me, I just bounced around different clinicians each one saying it was highly unlikely to be TOS and that I'd been very unlucky if it was...

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Magpiecomplex · 14/08/2021 07:43

That is pretty crappy. Good luck for your op.

Original poster

toodizzyizzy · 14/08/2021 11:41

Thank you

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YellowSunshineSky · 15/08/2021 23:20

Good luck with the op. Are you part of any of the Facebook TOS support groups? There's a UK one.

Original poster

toodizzyizzy · 17/08/2021 01:15

Thank you, I, had my pre-op covid test today, so three days to go...Praying it doesn't get cancelled again! I'm not on Facebook, it didn't even occur to me that there would be a support group on there, so thanks for highlighting that. I'll have a look xx

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YellowSunshineSky · 17/08/2021 08:39

I will keep everything crossed that your op goes ahead this time. Do come back and let us know. Go well! X

Original poster

toodizzyizzy · 17/08/2021 12:35

Thank you @YellowSunshineSky

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YellowSunshineSky · 30/08/2021 11:23

Hope it went well @toodizzyizzy and that you're recovering well.

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