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?

[toodizzyizzy]

@fernfriend No worries at all, I'm pleased to hear that you are making a good recovery. I've had all sorts of problems along the way, along the whole arm to my finger tips. I was struggling with sore wrists for a time. I was tested for carpal tunnel, but nerve conduction tests didn't point to that. The Dr who ran the tests said was probably due to compression high up in the Brachial Plexus. It sounds like you have a great physio supporting your recovery. I was at the hospital last Friday seeing the consultant and we mutually agreed not to go ahead with surgery on my left - it's actually showing signs of improvement for the first time in two years - I'm so happy I was dreading surgery again. I've been left with permanent disability in my right arm, they don't think the nerves will recover at this point. There's a lot of scar tissue too, which they don't want to operate on as it risks further damage...At least I know what I'm dealing with and I have no regrets about the surgery - I have mobility back and I know the blood flow is good again, rather than having near total occlusion. It's a tough recovery, but I'm sure you agree the surgery can be very successful.

[lingle]

I hope this inspires rather than pissing people off but I did a 2 hour African drumming workshop this weekend.
kept waiting for the jangling but it didn’t happen :)

[fernfriend]

@ttoodizzyizzy - I am so sorry for being rubbish and forgetting to reply to you. Your advice and experience has been so helpful.

How are you doing? Have you been given a date for the surgery on your left side? I hope it happens quickly.
I feel like I am making a good recovery. My right hand is still noticeably weaker than the left hand, but I'm used to it now. I have a really good physio, and she's been helping me with posture and I'm doing the shoulder exercises religiously! So much is at stake, I don't want to mess up my recovery!

I still have problems with my wrist though - I've lost flexibility in my wrist and the physio hasn't helped it improve. Have you experienced the same?

Work has been really good to me. I knew they would be - I am lucky to be in a school where the SLT looks after staff. I'm glad I took your advice and asked for 2 months before going back to work.

[fernfriend]

Sorry to hear that you've been suffering @SpottyCrumpet . I would push for a referral for further investigation. I had symptoms on and off for 20 years, but the symptoms got so bad that it was effecting my sleep, and my quality of life. I couldn't drive, or wash my hair or carry anything heavy. I started dropping things and I was in constant pain.
My gp wasn't interested so I went to see a non specialist physio, and he wrote to my gp with a recommendation that my symptoms be investigated. My gp referred me to a hand and arm specialist physio, who diagnosed me with compartment syndrome. But she said there wasn't much she could do to relieve the pain.

I was desperate so I went for a private consultation with a hand, wrist and elbow surgeon, who thought it was probably TOS. She referred me to her NHS team, and i had a lot of tests. She also referred me to Teri Beyford, a specialist TOS physio. 3 years later, I had surgery for TOS which involved having part of my top rib removed, along with part of my scalene muscle. It was a brutal surgery, but, 10 months on, I am starting to see improvement in my hand and arm. I still experience discomfort and pain, but it is not a patch on the pain I was experiencing last year.

I hope your symptoms improve and that you find a good consultant, who takes your symptoms seriously.

[SpottyCrumpet]

Thank you, sadly no where near me!

I have collarbone pain, shoulder pain when feel breathing and sneezing, tingling in my ring and pinky fingers intermittently.

my Gp wasn’t interested

[toodizzyizzy]

@SpottyCrumpet Is the recommendation above of any help? It's really hard to get any medical professional to take TOS seriously. It's totally devastated my life. The delays during COVID and lack of in-person physio have caused permanent disability. I think I'm one of the unlucky ones as you should be able to treat it with physio (unless the arteries become occluded, that needs surgery). My main symptoms are: pain across collar bone, jaw pain, headaches, pins & needles in arms, numb finger tips, I drop things constantly, hate pressing buttons or using a keyboard as that flares nerve pain. Do you relate to any of those?

[lingle]

https://smithyclinic.co.uk/the-team-physiotherapists/

[SpottyCrumpet]

I saw the Bristol clinic and was disappointed it’s so far, i’m in the south east. I am quite lucky because the symptoms only started in June so I think I’ve caught it quite early, it’s just getting the right treatment at this stage for my symptoms.

how is your recovery going? What is your day to day life like with it? I hope it’s improving now you have a good physio!

[toodizzyizzy]

@SpottyCrumpet It's so frustrating when medics are so dismissive. It's a rare condition that most doctors have never seen and don't understand. There are some good consultants in the UK that you can ask your GP to refer you to under "right to chose", or you can pay privately. If you are anywhere near Bristol then there's a specialist TOS clinic there which can refer you back to the NHS when you are diagnosed.

If you can find someone near you on Facebook that can make a recommendation that will save you a lot of time and money. It took me 2 years to get diagnosed, which is relatively quick compared to other people. My TOS didn't show up on either nerve conduction tests or ultrasounds. It could be seen on an MRI with contrast. It's different for different people, which makes diagnosis even more difficult. I know it's awful when you are in so much and you can't get anyone to take you seriously - keep pushing tho! Good luck and feel free to post questions if needed.

[SpottyCrumpet]

Thank you, I’ll check it out.

no. I’ve been dealing with it privately, initially I was just told postural and then the tingling started so a few people have thrown about TOS but nobody has suggested a medical route to take. Orthopaedic consultant I approached to assess my shoulder was very uninterested when my symptoms didn’t match my MRI results.

[toodizzyizzy]

Finding a decent physio can be a battle. It's worth asking in this group if anyone has any recommendations for you:

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

I met some terrible physios along the way that have done more harm than good. I have a fantastic one now. I'd be lost without and I am feeling much stronger, but no amount of physio can help the nerves to heal. My posture is improving very slowly, and I'm no longer permanently hunched over. It's going to be a lifelong challenge I think. My collarbone pain is awful, I feel like I'm being crushed 😔
it's a complex condition. Are you under a consultant?

[SpottyCrumpet]

Hello! How are you doing?

I have pain in my left shoulder when deep breathing / sneezing, tingling in my fourth and fifth fingers of the same hand. Collarbone pain.

I have collarbone pain in the right shoulder When pulling my shoulder back into the correct position. As such I am just permanently hunched.

physio has been suggested for treatment but finding a physio that’s any good is looking to be very difficult.

[toodizzyizzy]

@SpottyCrumpet Hello, yes I'm still here and still struggling with TOS. Sorry I meant to reply the other day and got distracted... pain meds do that to me! I'm sorry you must be struggling if you think you have TOS. It's not well understood in the UK, and not easy to get a diagnosis. What symptoms do you have? Do you have any questions?

[SpottyCrumpet]

Is anyone still on this thread? Pretty sure I have TOS

[toodizzyizzy]

@fernfriend No worries. I'm interested to hear how you have been since your surgery. It sounds like it has gone relatively well. I have atrophy in my arm and shoulders. It's definitely made my recovery much harder. I would definitely find a good private physio, the muscle wastage can be reverted with professional help (and a lot of hard work. After 18 months of physio I am slowly feeling stronger. My left arm is deteriorating from TOS, so that's another challenge.

How are you coping with work? Have they been accommodating? I'm sorry to hear the hospital set you home with just codeine, that was never going to be sufficient.

It took a year for the pain around the surgical site to diminish. I also have an area of numbness, but I've got used to that now. It sounds like you are doing well overall. It's a long recovery for many people, so you probably do still need to pace yourself.

[fernfriend]

@ttoodizzyizzy I'm so sorry I didn't reply! It was all a bit bonkers after the surgery. They sent me home with 3 days worth of codeine. The gp gave me tramadol when the codeine ran out. I've been back at work since March, and am starting to feel normal again.

The surgeon left an internal stitch, which wasn't on my notes, so I didn't know about it until it got infected and the scar split! He also forgot to mention that he would cut a 'bundle of nerves' near my collar bone, which means the skin around my chest and shoulder are now permanently numb. It feels really strange, even 4 months after the surgery. Did you experience the same? And I do still have pain in the surgery area - how long did the pain last for you?

I have atrophy in my arm and hand as I had TOC for 20 years before I received diagnosis. Movement and strength has been impaired for years so I don't know what is normal. My arm is still quite weak, but i think my grip is improved. Did you get stronger after the surgery?

I hope you don't mind me asking about your experience. Thanks for being so helpful in the lead up to the surgery..

[toodizzyizzy]

@fernfriend Thanks for the update, that's great to hear you have had your surgery now. I was so happy post-op that it was finally done after all the months of worrying! It's always better to be on the other side of surgery.
To be honest the NHS physio I received was dire, it made me worse as they didn't understand the condition. The nerves need time to heal before muscles can be strengthened and that doesn't suit NHS metrics. I don't think my experience in uncommon. It depends where you live. I'd be prepared to pay privately, it will be the best investment in your recovery.
For now, rest and follow gentle range of movement exercises (which is what you've probably found online). Keep on top of your pain meds too, what did they send you home with?

[fernfriend]

I've had the surgery! I was offered a cancellation date on 10th February! I was discharged on 11th and have been recovering at home. They removed 2 inches of my top rib and a muscle that 'shouldn't have been there'. I've got a neat 8cm scar across my collar bone. I'm so happy it's all done.

Toodizzy, did you have any physio after the surgery? I was meant to see a physio before I was discharged, but there wasn't anyone on shift. I found a TOS post surgery info leaflet online so have been doing the exercises they recommend. I've rung the vascular dept at the hospital and they said a physio would be in touch ASAP.

Anyway, I just wanted to update you! Thanks for the advice and encouragement Toodizzy! It's been so helpful to hear about your experiences. Thanks for sharing them.

All the best!

[toodizzyizzy]

@fernfriend Ah sorry to hear that happened. My first surgery was cancelled the first time - it was tough with all the emotional and practical preparation that goes into any surgery!

I hope you are recovering ok from covid? It definitely made my TOS symptoms much worse.

I hope all goes well for your surgery in March.

[fernfriend]

@toodizzyizzy

I was thinking earlier that it's also good to have the names of osteopaths/physiotherapists!

@fernfriend I hope that your operation went well and that you are healing ok?

Thanks Toodizzy! Unfortunately, my surgery was postponed due to the nurses strike and then i caught covid so they cancelled the surgery. 😕 but the good news is that it's been re booked for 7th March.

[toodizzyizzy]

I was thinking earlier that it's also good to have the names of osteopaths/physiotherapists!

@fernfriend I hope that your operation went well and that you are healing ok?

[EqualFranknessWithYourLadyship]

…he also sent me to osteopaths which was the best move. My osteopath is v good and has hard-won expertise in TOS (said I was the most extreme case she’d seen). She would only see you if she felt you were “safe to treat” and could see your scans etc - but if you end up needing either Leeds neurologist or Yorkshire osteopath pm me.

[EqualFranknessWithYourLadyship]

Hi I got the (tentative) diagnosis from a neurologist in Leeds is that where you’d go?
mine affected both hands so the GP suspected multiple sclerosis. His main skill was to eliminate the more systemic neurological conditions and say what tests were needed.
I also had my ultrasound in Leeds and the radiographer (is that the job name?) said his wife has TOS so he was ultra-aware….

[WhatIsThisPlease]

Thanks @toodizzyizzy,

I've just requested to join the group.

Thanks again, I really appreciate your help. Being in pain is very draining :(

[toodizzyizzy]

@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.