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]

Hi @YellowSunshineSky I'm recovering at home now thank you.. The surgeon seemed very happy that it went well. It turned into a 4 hour operation though. It's been harder than I expected and I feel very weak still. I'm so glad to be on the other side of surgery. Hope you are doing ok?

[YellowSunshineSky]

Sorry to hear that your op was so long, but I'm glad your surgeon felt it went well and that the surgery is behind you now.

I'm going through on-off flare ups of symptoms. On Saturday I moved in a way that set it all off again and it's quite bad now.

I've got an appointment with Rob at Cherington but it's not until November so I'm trying to decide whether to see another specialist privately. I can't remember what I've already said in previous posts (and am on app so can't see easily), my GP has been useless so I'm having to pursue a diagnosis on my own which is quite demoralising.

Having said that my GP has referred me to a spine assessment with a physio, so I'm in the system, but it'll take months to get that appointment and I'm not expecting the physio to understand my issues (others haven't in the past).

[YellowSunshineSky]

Toodizzyizzy what type of specialist eventually diagnosed you?

Do you have someone looking after you at home as you recover? I hope you're able to get comfortable and that your recovery progresses nice and quickly.

[toodizzyizzy]

Hi @YellowSunshineSky sorry to hear you're having a flare up, it's so frustrating when you get a set back. Does your GP at least help with pain relief?
I have help at home, I can see how exhausted my partner is (he has his own health issues) and that makes me sad. The teens need to be doing more to help...
I was diagnosed by an Orthopedic Consultant after the MRI. I was with Orthopedics for 2 years following the accident (they helped to correct a wrist injury with physio) and then I got transferred to a Plastic Surgeon.
It may differ between health trusts but your GP should make enquiries to find out what consultant specialises in Thoracic Outlet Syndrome.
November seems a long time away, but you will be waiting longer with the NHS. I had to wait months for each test - several x-rays & scans and a nerve conduction test. It was only the MRI that showed anything. I was fortunate my consultant believed my pain and was persistent.
I'm pretty drugged up so hopefully I've covered everything ok. I'm happy to answer questions. Keep me updated.

[YellowSunshineSky]

Thanks for putting that down, it's useful for me to understand your journey to diagnosis and treatment.

I'm glad you've got someone at home, but I can imagine it's difficult if they have their own health issues. Teens can be frustratingly oblivious too.

Here's hoping your recovery is swift and that you'll see big improvements to your symptoms once you've recovered from surgery.

[toodizzyizzy]

Thank you at @YellowSunshineSky
I'm honestly happy to help where I can. Please do post to let me know how it's going. I wish I'd created this thread sooner as it would've really helped along the way xx

[YellowSunshineSky]

Thanks, I'll keep you posted. My pain is quite mild so in that respect I'm ok, I'd just like to get to the bottom of what's causing it.

[OwlBasket]

@toodizzyizzy I hope your recovery is still going well!

@YellowSunshineSky I was diagnosed by a neurologist. I’d gone for nerve tests to see if I had carpal tunnel, which I didn’t think it was but the GP did. When the tests showed no carpal tunnel I explained that I wasn’t surprised and felt the problem was coming from my shoulders (with examples). She did some manual tests and (looking surprised and rather triumphant) booked me in for nerve and blood flow tests for the whole of both arms. When I when back for the tests the technician was v v confused by the results, repeated the tests with different electrode pad things and changed machines twice. He honestly thought the equipment was faulty (no blood flow of nerve transmission in various positions).

The neurologist explained that the only actual treatment was a damned hefty operation but that postural therapy could be a great help. I’m hyper mobile and she thought that I’d likely respond better to postural therapy than most, so, she advised I try Mensendieck therapy and take it from there. It’s been a great help and although I’m not symptom free I’ve learnt a lot of strategies to avoid and ease symptoms, haven’t had a bad flare up in years.

[OwlBasket]

Typos!

[YellowSunshineSky]

Thanks for sharing your experiences @OwlBasket.

Are you in the UK? And if so, how did you access the Mensendieck therapy? Through someone local to you or through online courses or YouTube? Just wondering if you have any particular recommendations?

@toodizzyizzy how are you feeling at the moment? I hope recovery is going ok, I'm sure it must be difficult. On the facebook groups that I'm on, people have been sharing their recovery woes, from what I can understand it can be a bit one step forwards two steps back. xx

[OwlBasket]

@YellowSunshineSky I should add I’d also had odd symptoms in my shoulders, neck, arms and wrists since my teenage years (40ish at diagnosis). I was on crutches for some time with a broken leg at 13 and the miles back and forth to school seemed to trigger it, looking back. Am also hyper mobile with big, heavy breasts.

Never got any further than repeatedly being told it was RSI (despite not doing repetitive work or whatever) and then sent away from phiso again because it clearly wasn’t. One day a school mum suggested the increasing lack of feeling in my fingers could be carpal tunnel, and well, that was that.

[toodizzyizzy]

Thanks for posting your experiences @OwlBasket it's good to hear that you found a therapy that helped you. Many of the same tests we're inconclusive for me too, the blood flow tests were quite dramatic though. I was I'd been more aware what a complex operation it was. I'm struggling with the recovery @YellowSunshineSky so I've just asked to join the TOS Facebook group. It would be good to know other people coped post op. It's quite an unusual operation I think, the GP and nurses at the hospital had no experience of it. I have s phone call with physio next week, so hopefully they do.

[OwlBasket]

Oh hi! No, I’m not in the UK. I went to see a Mensendieck therapist locally, the obligatory health insurance here covers 10 sessions of physio a year and they count Mensendieck as physio with a specialist referral.

I doubt you tube would be much use TBH, she worked with the way I use and move my body and correcting that. For example I tended hold my shoulders with the joints rotated oddly, and there was something with my gait that was exacerbating it all too. She looked at my sleeping positions, how I did various tasks that caused disproportionate pain, that sort of thing. Taught me to recognise and respond to the signs my body was giving I was blocking. There I also some stuff (like wearing backpacks or drilling or painting ceilings) that I absolutely must avoid. It was totally personalised and really rather subtle. I think I had 8 or 10 sessions in the end. That was about 3 years ago.

[YellowSunshineSky]

Sorry to hear that you're struggling toodizzyizzy - based on what I've read on the facebook groups I think that is quite normal. There are a few facebook groups I'm on:

Thoracic outlet syndrome UK www.facebook.com/groups/613687042111051
Obviously UK specific but can be a bit quiet

Thoracic Outlet Syndrome Support Community
www.facebook.com/groups/TOSSupportGroup
This one seems quite US based, but interesting to read how others are getting on

Thoracic Outlet Syndrome (TOS) Support Group
www.facebook.com/groups/TosSupport
This one has most members and seems most active, I've noticed posts there from UK people (I think, unless I'm mixing it up with the group above)

Thoracic Outlet Syndrome Ladies Support Page
www.facebook.com/groups/446006529319102

IMPORTANT NOTE - there are quite a few negative stories and posters on some of these groups, I worry that some of them might be bad for your morale, BUT I think on balance, having others to talk to and share with and access to info is a good thing. But do be aware that most of the people who have had successful surgery and are now symptom-free will have either left the groups or not be posting any more. Please don't let the negative stories worry you, this op has a good success rate.

If you'd like to read about the success stories, use this link which will anchor the page at a post from someone called Ibrahim who asked if there were any positive stories (as he was reading a lot of negative ones in the group):
www.facebook.com/groups/205345126171314/?hoisted_section_header_type=recently_seen&multi_permalinks=4342060475833071

[YellowSunshineSky]

OwlBasket sounds like you had an amazing therapist! I

It's great that you've been able to sort it out with physical therapy and lifestyle modifications.

[YellowSunshineSky]

@toodizzyizzy forgot to tag you in above, I'm sure you'll check your own thread, but if you're anything like me and you have most MN notifications switched off, it's nice to get an email when you've been tagged. :-)

[OwlBasket]

@YellowSunshineSky oh it’s not sorted! Just managed. Causing a major flare up would still be amazingly easy. For example, I slept ‘wrong’ last night and am due my period (so extra stretchy), if were now to clean the windows I’d have a least a week of horrible problems.

[YellowSunshineSky]

@OwlBasket oh no! Sorry to hear you still suffer. It sounds very frustrating.

[toodizzyizzy]

@OwlBasket sorry to hear you're not feeling good with it today, the pain can be incredibly hard to deal with. Your therapy programme sounds amazing. I'm going to need a lot of help with my posture now I'm physiologically imbalanced!

Thank you so much @YellowSunshineSky for taking the time to type all that information out. I've asked to join the group's. I'll try to focus on the positive stories so thank you for the heads up. There's very little UK based information, anything useful I can find is US based. I have a long road yet, but hope of full recovery means everything.

[OwlBasket]

Thanks! I wish you both all the best.

It’s so worth looking into related therapies like ceaser or Alexander if you can’t access a mensendieck therapist. I can’t express what a difference it’s made to managing this.

Another really important thing is a good, good bra. The band should take the weight, not the straps. See Boob or Bust threads on here. When my bras are aging or I’ve lost weight the symptoms are always significantly more annoying and harder to manage.

[YellowSunshineSky]

Thanks OwlBasket, I do have an Alexander practitioner near me so might look into that.

Good point about the bra. I always wear a well-fitted one, but some of mine are getting a bit old, it's probably time for new ones!

[toodizzyizzy]

@YellowSunshineSky Thanks for directing me towards the FB support groups. I've learnt a lot. I definitely didn't appreciate what a complex surgery is was! I started with the positive thread you shared, glad I did!

[Iamaslummymummy]

Hi, I've had bilateral arterial and neurogenic TOS since 2010. I had right side surgery in 2011 and my symptoms on both sides are pretty much manageable with my meds combo. I've got hypermobile ehlers danlos syndrome too so strengthening is a big part of that. I attended a 3 week inpatient pain rehab programme at rnoh stanmore in 2017 which was life changing in terms of coming to terms with pain and having a life long condition.

I've been on the various fb groups throughout and have always found that people drop off after surgery unless they've had a bad recovery. I've got 6 or so friends from the groups from back then and pretty much all of us are better than before. Not fixed, but much better.

Good luck everyone

[YellowSunshineSky]

@toodizzyizzy I'm glad you're finding the FB groups useful. I need to modify my use of them as I was getting a bit sucked into reading them too often and then finding myself feeling more and more anxious.

As Iamaslummymummy says and as I keep saying to remind myself - the success stories will probably have mostly dropped off.

That's great that you're much better Iamaslummymummy. The pain rehab programme sounds fantastic, thanks for mentioning it.

[fernfriend]

Toodizzy thanks for sharing your experiences in this thread. Quick question.. how long was your recovery after the surgery? My surgeon said it would be 2 weeks. What was your experience?
I hope you're fully recovered now.