hi joanna81,
its good to speaK 2 someone closer to home.... in a strange way it makes me feel more supported that I'm not the only one on home ground going through this rotten TOS journey ( there seems to be so few of us here in the UK!!!). I suppose the surgery went as good as it could have but unfortunately I'm still suffering in the thoracic region. Alot of tenderness near my collarbones/ neck and arms etc on use.
Why did you have to return to hosp after 2 days?
Mine wasn't perfect either as I had an extreme reaction to the pain relief meds (diclofenac..... terrible stomach pain and wicked nausea) almost worse than the surgical incision! I thought that I was hard done by because of being in for 6 days, you was much longer.... what happened?
I too went through the phase of wanting to get it all out of the way but sadly encountered unexpected post surgical depression/anxiety.... which hit me me HARD! I thought that I was in control of my emotions but from no where I lost myself, my post op fear and pain was very real and intense.
I have attended a CBT course since to work on my feelings and due to do a pain management course in the hope to take on board some techniques to guide me....... well, that's the idea anyway. I need to prep myself before going through 1st rib excision surgery again. My sleep pattern is still disrupted from the discomfort from my neck/shoulders etc, so I feel very anxious about disrupting the other side. Time to heal is needed.
Anyway I'm glad to say that in the next few weeks I have follow ups with a neurologist and the surgeon who performed my last op.... watch this space!
I wish you all the very best, but give yourself time to heal sufficiently before another op. Take care and keep in touch. BEST WISHES!!!!!!

It is, I've never met anyone with the same affliction. **. It is pretty rare.

Ugh... Well after my surgeon did my surgery on Friday he buggered off on holiday.
I had internal bleeding, so the drain kept filling, no one wanted to authorise it's removal as The drain was still draining and they were not my consultant. I needed a blood transfusion early on. I also had fluid around and/or on the lung,so that caused pain and extra difficulty breathing. After 8 or 9 days my surgeon returned and said he was surprised to see me still there and said to remove the drain. (In amongst all that was the heamatoma(the bruise was crazy) and severe post op nausea.)
I had another chest xray the next day and was told I cOuld go home !!
I was doing ok then the next day I was having difficulty breathing and they were worried about clOts and infection, so went back in to my local hops( I had the surgery 45mins away as he wAs a specialist and had supposedly done the most surgeries in the country.) ended up on the chest ward with sick people!! It was traumatising. They had no clue about it and had never seen such a surgery I cannot count how many times I was asked why I had a rib removed. I Was there for 6 days had numerous x rays and ct scans till they heard from my surgeon who said all my side effects were normal due to the extent of the bruising and such.

I was so glad to come hOme it was awful. I have depression and anxiety issues already but I manage it all mostly by medicating with pot, which helps with those symptoms and the pain and nausea.
Also still take paracetamol, tramadol and now amitriptaline. Although I try to keep that to a minimum I much prefer the effects of cannabis, it isn't always enough by itself though.

Gosh, ill be impressed if you got through that. I have been thinking about seeking therapy or counselling to try and deal with it all. It has taken a toll on my relationship. I'll be glad when it's all ovEr. It is an intense experience.
There were various neglegancies I need to ensure don't happen again to try and minimise trauma to me.

Oh my gp is also thinkingof reffering me for physio which I think I need.

Take care

Wow.... pretty similar outcome re the breathing difficulties and nausea etc post op.
I should find out this week whether or not I have a place for a pain management course. I initially did CBT for 6 sessions and they then referred me to have an additional assessment with another therapist to see what self help group would suit me best. I would give it a go, if only to learn a few techniques to help refocus your mind when the body is hurting, or just to take the opportunity to release some tension in discussing your pain issues with a therapist instead of aiming towards your partner. I know how the constant mentioning ( which can't be helped ) takes its toll on intimate relationships. Use outsiders to vent and rant on about the aches etc. That's the good thing about this forum. When you hurt......log on.
I stay clear of pot purely due to the fact that I have worked so hard quitting smoking ( 3 years now). I think that being smoke free has also helped me with feeding my body more oxygen>>>>> better blood supply to my extremities...... I also suffer from Raynauds Syndrome. However I have noticed that I have upped my drinking alot more and I find that when I'm hurting I turned to a few glasses of red instead of meds......I guess that's another vice to kick now!
I'm seeing my neurologist today, a post op update. I'm definitely going to ask about physio, I'll let you know of the outcome.
How are you feeling now?
Take care, best wishes!!!!!

Quick update..... just got back from hospital visit with my neurologist today. Good news, I'm going to get extra tests done to rule out/check ongoing symptoms post op. There's a possibility that my hands still go numb at night due to carpal tunnel??????? I've been referred for extra EMG tests and to recieve Physiotherapy.
The physio is definitely needed for post op tightness and ongoing issues associated from TOS, my shoulderblades are so tender at the moment and tight which is creeping up to the neck etc.......... I need those muscles relieved!!!!!!!!!!!!!!
Best wishes to you all!

Hello - I'm from Nottingham and was diagnosed with Neurogenic Thoracic Outlet Syndrome late last year. I thought I would post on here as it looks like UK TOS sufferers are rare species, although perhaps there are others out there who haven't been diagnosed yet. I know it took me a while, and I feel fortunate to have found a doctor who was familiar with the condition.

I'm 26, I'll be turning 27 the day before my surgery (which is on the 26th March). I've long had problems (stiffness/weakness/'thin-ness') with my right hand, and various cold pains in my right arm and upper back. I'd put it down to a combination of sport injuries and a fall on my wrist I had many years ago. After speaking with many doctors, and some nerve tests in my hand that didn't get to the root of the problem, I eventually gave up on there being a particular cause or any treatment.

Then I noticed about 18 months ago, that the muscle was wasting away on my thumb - eventually I was referred to a hand specialist in Derbyshire, although by the time I got to him the atrophy on the base of my thumb was quite severe. I'd lost over half of the mobility in it as well. This specialist sent me for more nerve tests, but this time also in the neck and upper arm areas (not just hand)

So what I thought was a hand injury turned out to be something I hadn't expected at all. I went for an x-ray, which confirmed I have a partially formed cervical rib - I've obviously had it all my life but never knew. At some point, either from an injury, sport (tennis), over-use or combination of factors, this sharpish cervical rib 'piece' has started to press down on the nerve quite considerably. I also have a significant amount of scar tissue going down my chest (I'm not sure if this has played a part in any problems - I'm seeing him next week to answer a few questions I have)

He made me do the 'East Test', whilst measuring the oxygen going down my arm, and it dropped to around 60% within a minute - which he said was the lowest he'd seen. It was a bit surreal, but he was quite honest that surgery was likely going to be the only way to prevent my thumb getting worse. From the severity of the oxygen test (and the atrophy already), I do see it as probably my best shot. My doc does hope to recover the last year of mobility in my thumb, but I'm going in with cautious expectations.

Hopefully I won't suffer post-op as much as those who have first rib resections - it's probably fortunate I don't have a fully formed cervical rib too.

I did like that the specialist described my attempt at a cervical rib as being like a 'council which laid down the cement but never built the house'

Hi

Not been on here for ages as I've had problems getting logged in to NeuroTalk but I too am based in the UK. There don't seem to be many of us but a few others have posted over the years I've been on here (since 2008). I've posted previously but basically had both neurogenic and arterial TOS which took a long time to get diagnosed - and didn't until I saw Prof Bernand (now retired) at Guys and Dr Holmes (great neurologist at Guys&Thomas). Was living in Glasgow but now in London. Had my first rib resected in August 2008 which made a huge difference. The surgery made a huge difference to me but I have developed some scar tissue which has left me with chronic neuropathic pain but surgery was still the right decision. Good to hear others experiences too and if anyone wants any information about what I've learned over the years about NHS/meds, just let me know!

Jenny

Good luck with the surgery

There are not many of us here in the UK. I live in the north west, I went to uni near you!
We share the same birthday! Poor you having surgery around then Though not sure if I will be up for much at that point either...
I am about 7months on from my first op and 7 weeks on from second.

Do try and prepare for the surgery knocking you for six, even if it goes very well.
If you want to talk, feel free to pm me

Take care

I'm in Medway in Kent. I had 1st rib resection and ant scalenectomy in Sept then problems with my lung and bleeding/clots led to drains and further surgery 2 weeks later. I'm still off work and am still having neuro symptoms however I am much better as arterial symptoms have gone and gabapentin and nortriptilyn deal with most of the pain.

hi

Sorry to hear about your experiences but glad you're starting to make progress. For me, getting rid of the arterial symptoms made a huge difference but the neuropathic symptoms are hard. I found working on most meds for them was tough as I felt so tired. Now on duloxetine which my neurologist is using increasingly and it's made a huge difference so worth considering if you too get quite a few side effects. It's only just starting to be prescribed more for neuropathic pain (licensed for diabetics with pain or at higher doses as an anti-depressant).

Hope you continue to improve

jenny