Anyone else suffering from Thoracic Outlet Syndrome?

[toodizzyizzy]

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?

@fernfriend Hi, I'm sorry to hear you have TOS but hopefully this old thread has helped. I'm surprised your surgeon said there should be a 2 week recovery period, are you have a rib removed? Who is your surgeon? The incision area will heal over in 2 weeks, but the nerves can take up to 2 years to recover. My muscles are still in spasm 14 months on. I need the other side doing, but I'm not strong enough yet. I've followed a lot of cases this past few months and those with the quickest recovery tend to be people with arterial/ venous TOS. I'd say maybe 6 weeks minimum if the nerves aren't affected

Thanks for your reply Toodizzy..
Yes, I'm having rib removed, as well as part of a muscle in my neck as it is, apparently, overdeveloped and that is restricting the blood flow to my hand. I have atrophy in my hand, which is caused by years of poor blood flow. I used to be a proficient pianist, but had to stop playing due to atrophy. My GP kept saying it was RSI as I have a lot of pain in my hand and arm, and the tingling only became unbearable 4 years ago.

My surgeon is Prof Frank Smith. He's a vascular surgeon in Bristol. Where did you have your surgery?

I am sorry that you are still suffering symptoms from the surgery. I was told that there was a risk but it's difficult to imagine anything being worse than my current symptoms. Are you still glad that you had the surgery?

I'm a teacher. My surgery is just before the Christmas holidays, so I will have 3 weeks to recover. Do you think that is realistic or do I need to prepare for some time off work?

Thanks again for your advice. I've been really worrying as I don't know what to expect.

@fernfriend
Yes, I'm still glad I had the surgery as despite my problems now. I was in a very scary place before the operation, as you may well be now. At least now I have a chance of getting better and you will too. Hopefully you can get back to the things you love, such as your music.

In all honesty I think six weeks is more realistic. If it is mainly blood structures that are being compressed then maybe 3 weeks is realistic, but you're going to need some accommodations. I'd be concerned about your moving around busy corridors and you won't be able to carry anything heavy. At 3 weeks you are probably going to be feeling absolutely exhausted still, so you may need a reduced teaching timetable (this may not be a possibility though).

Please don't underestimate (as I did) that this is a major surgery. Do you want me to share a link to the UK TOS group on Facebook? It's only a small group as it's quite a rare condition.

I have heard good things about Frank Smith, you are in safe hands.

Thanks for sharing your experience Toodizzy. It is very helpful. I am really grateful that you have shared your experiences here as I would have believed my surgeon and planned to be back to work straight after Christmas! I am going to talk to my line manager and see if I can take unpaid leave or something.

I'm not on Facebook, but thank you for offering to share the links to the groups.

Thanks again for all of the advice. I really appreciate it

I was diagnosed in 2015, both sides, both blood and nerves.
pretty much symptom free now.

…hyper mobility/scoliosis were the underlying reasons. Hours spent pruning overhead the trigger!

Did you have the operation? It's really encouraging to hear that you are symptom free now.

no.
it was strange, the duplex scan result was apparently pretty bad (I could cut off blood/nerves by raising arm a certain way, it was quite empowering to see) and I was referred for vascular surgery but by the time I took the results to the neurologist I was getting better as a result of osteopathy. So he said keep doing that.
once the flash was less inflamed the osteo made me go to Pilates and take it seriously. I worked hard on posture, learned about it, etc.
i have the extra rib but it wasn’t implicated. It was more scoliosis and hyper mobility and anatomy (broad droopy shoulders)

Flesh

@fernfriend Sorry I didn't pick up that you had replied! I'm glad you found the thread useful. Please feel free tonme

@fernfriend I'm sorry not replying to you sooner! I'm glad you found the thread useful. It's very hard to get any information at all in the UK. I wish you all the best for your recovery - honestly, please feel free to me anytime. I had a call last week to say I was booked in for my left side on 22nd December 😲 I'm having another MRI soon, so surgery is being delayed whilst they do further investigation.

@lingle That's really encouraging to hear that you improved by working on your posture. That's what I'm very focused on and hopefully I can avoid further surgery

@lingle hi! I qas habinf pain in one arm and hand. Now its both, especially in the mornings . If i out my arm up if feels cold and goes numb/ what things helped you most? X

sorry to hear this Starr. I had the cold arm thing once, it was pretty weird.

I'm assuming you have a diagnosis?

What helped me most were:

1. the neurologist I'd been sent to (they thought it was MS because bilateral) noticed my big joints (hips and shoulders) were hypermobile. (note that this doesn't get looked for on the scale that GPs have to use - it's all about fingers thumbs and whether you did cartwheels as a child).
2. the neuroloist also suggested an osteopath could help (old-fashioned osteopaths have a specialist massage technique)
3. I went to see a specialist physio Terri Bayford therocsolutions.co.uk/ who confirmed the diagnosis and said her one piece of advice (as she lives at the opposite end of the country from me so it was a one-off) was "don't slouch" (ie when sitting lift up from the waist).
4. I went to the osteopath after some hopeless attempts by local non-specialist physios to help. The first osteopathic treatment was just massage but my hands "unlocked" from their claw position for the first time in weeks.....
5. Once the osteopath felt the degree of inflammation was sufficiently reduced, she weaned me off osteopathy and told me to get very very serious about pilates and posture.

Starr I used voice- to-text dictation at work for about a year as well and got quite good at it.
I'm very very careful about my desk setup now. My keyboard tray is under my desk as that's now I can type with relaxed shoulders. It's a personal thing to do with arm length.

@Lingles no diagnosis as of yet. Its been going on for a while.
also thankyou for your reply and helpful info ❤️
i find always feel worse when im texting etx so i always send voice notes. I have rang up a private shoulder specialist who she vould refer me etc. My hands are like claws in the morning and swollen xx

I have also had 3 mris also worried about ms and all came back clear xx

that's helpful Starr.

Thoracic outlet syndrome is very simple. I think the way my osteo explained it to me was that you have 7(?) pints of blood circulating. if the pipes get kinked or squashed at the shoulder maybe only 5 or 6 are reaching your arm. If there is any more squash at the elbow or any carpal tunnel type issue maybe only 3 or 4 reach your hand. That's bad enough to get "claw hand" and cold arm.
It's pretty much the same with nerves. They don't like being squashed! inflamed flesh, droopy shoulders, extra ribs etc get in the way of the blood vessels and nerves as they pass under your collar bone and into your arm.

Teri Bayford used to come and lecture local NHS physios - she do still. I would text her and pay for a telephone consultation. I doubt she will diagnose over the phone but she sounds like the person you need to talk to right now. TOC is her favourite subject :)

@Lingles i think its aldo causing me some dizzyness etc!
i hope i can get this sorted , its getting me very low. Ive been like this for ages just need aomething to be done xxx

Hi everyone

I've just read the full thread and really sorry to hear how much pain some of you are in. I'm just wondering, did any of you ever suffer with pain around (particularly underneath) your collar bone?

I had a spell about 6 years ago that left me in debilitating levels of pain. Literally like someone was hammering on my clavicle.

It finally settled down after years of amitriptyline.

It's flared up again recently and GP has mentioned TOS.

I don't get pain in arm or hand but can't lift arm up. It's as though all the muscles are too tight to move. But the worst thing is the pain around my clavicle. It's excruciating.

Have any of you experienced this?

Thank you

There is a good Facebook group - a bit USA-focussed but worth looking at. The test I had is a “duplex ultrasound” - you move you arm around and you can see on the ultrasound where the compression is.

@WhatIsThisPlease Sorry to hear your symptoms have returned. I experience intense pain across my clavicle, it feels like my shoulders are going to explode! My TOS diagnosis was picked up an MRI with contrast. TOS is a diagnosis of exclusion. Nerve conduction tests tend to be normal. Doppler will only pick up TOS if it's being conducted by someone who is aware of TOS - this is a major issue in the UK as there is very low awareness across medical departments. I'm amazed your GP is even aware of TOS. Under the NHS you have the 'right to chose' a referral to a consultant of your choice. The TOS UK Facebook page can help to find a consultant who is knowledgeable about TOS. If you'd sooner avoid Facebook then I can offer you a few names as a starting point.

@toodizzyizzy
Thanks for your reply. I've searched for the page on Facebook but can't find it.
I do have private health through work so was wondering about using them for a referral?
I noticed last night that if I lift my arm at right angles to my body (or as close as I can get with painful side) I do experience pins and needles in my fingers so I'm convinced there is some kind of nerve compression happening.
Could you tell me name of the Facebook page, as it's written on there? Otherwise I would massively appreciate names of consultants you think could help. I'm in Yorkshire, if that makes any difference.
Finally, do you find your pain is better or worse when you wake up? Mine is much better after lying down and then comes on a couple of hours after I get up. It then gets worse and worse through the day.
Thank you again for your reply.

@EqualFranknessWithYourLadyship

Thank you for replying.

Could you let me know the name of the Facebook group you're referring to? I'll take a look.

I'd be happy at this stage to just get a diagnosis. I had months and months of physiotherapy last time and he finally admitted he had no idea what was causing it.

Do you find your trap muscles get very tight during flare ups?

Thanks again for your response.

@WhatIsThisPlease

Sure here you go:

www.facebook.com/groups/613687042111051/?ref=share

It's not a very active group, just a few posts a week but there are a lot of knowledgeable people on there. Someone recently asked about surgeons in Yorkshire:

m.facebook.com/groups/613687042111051/permalink/2988144477998617/

Pins and needles were one of my first symptoms and I progressively got worse over time. Even if it's not TOS it really does sound like compression is taking place so you want to make sure you are seen by someone competent asap. The waits in the NHS are horrible, so I have your health care plan can help.