Thoracic Outlet Syndrome.....anyone have this?

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Slightlyconfused

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Hey, as title really......i was just wondering if anyone had/has this and their experiances and treatment, i was diagnosed nearly two years ago and after failed phyiso on one side had my first rib removed and blood vessels tweaked nearly three weeks ago.

I'm bored, in pain and missing my horses and then my brain asked this question......

Chocolate cake for any one who answers :D

Xx
 
Hiya.. I know what it is but don't have any personal experience of it.. Just want to wish you a speedy recovery and hope the surgery alleviates your symptoms..

I had physio in that region before they got on and operated on my hand, not the most fun I've ever had xx
 
Hi there,

I was diagnosed with this last year after initially being told I had carpal tunnel - I was sent to a physio to see if exercise improved things but to be honest it doesn't seem to have made a difference so I am due to go back in May to discuss the surgery option, but I'm not sure about going under the knife as when the surgeon mentioned it even he didnt seem convinced it would sort things out.

Hopefully you will be back with your horses soon and it isnt too painful in the meantime
 
I recently had problems with my right arm and shoulder and this was one of my worries that I might have Thoracic Outlet Syndrome but luckily for me it was a very painful inflammed stubborn trapped nerve. I can't begin to imagine having pain as long as you have, mine was a couple of months, it must be driving you nuts, where abouts do you live?
If near me you are welcome to come and have a browse round my workshop and meet the team (dogs!) if it helps relieve the boredom, whatever happens I wish you well and hope it gets sorted, Oz :)
 
Hippo, where abouts are you? I my surgeon is at the Nuffield Orthopedic Centre in Oxford is fab.
They did warn me that it is a 50/50 chance op but since Physio didnt work on my left side and i was still getting the cramping, pain and numbness in my hand and it was limiting my riding and looking for a job i went with it as i had nothing to lose.
Thankfuly since the op i've had no pain, cramping or numbness(except in the tip of my thumb:D). so fingers crossed it worked......its just the recovery is crap, and long. Both the physio and surgeon said it would be but i didnt think they would be this right!:'(
Where is your surgeon based? Mine does quite alot of these types a year......do you have the extra rib? I didnt, both xray and mri came back clear but when the went in they said my first rib was a little too close to my collarbone and that it made the passage for the nerves and arteries/veins abit too tight to get into my arm.

Cremedemonthe, i live in south Bedfordshire :D Thankyou thats nice.


Thanks guys :)
Xx
 
Hi, yes I had the same surgery back in the late 1990s and even then was told that TOS was a very old fashioned name for it! They were trying to get to the bottom of why first I had a trapped ulnar nerve released but still had tingling, loss of sensation, grip and muscle tone in my right hand and certainly the blood flow down my right arm from my neck wasn't good ( I could hear the backflow through the stethescope the consultant plugged into my ears) but as i had a big attack within 12 hours of the op, I knew it wasn't the answer either. What I actually have is RSI but of course that isn't a "real" condition - apparently. I had to take matters into my own hands (pardon the pun) in the end and have spent the last dozen or so years writing left handed and accepting that I will never play the piano to any decent standard again.
 
Fatpiggy, thats crap....being dump what does RSI mean?

Im hoping that it's worked as the symptoms has gone, my consultant said that not alot of doctors believe in TOS. Mum used to say that when i was as young as 6 i complained of pain, numbness and tingling in my hands but the doctors didnt know what it was and when i was diagnosed with M.E they just put it down to that......over twenty years later my brother explained my symptoms to his hand surgeon and he said he knew what it was and get me refered to him......i had it on both sides but he wanted Physio first and it has corrected my right side but the left continued to get worse so thats when we went for the surgery as i had nothing left to lose anyway as i couldnt ride my mare anymore as when she spooked my hand would either cramp round the reins or drop them :o

Who did you see?

It's nice to know that there are others with it as no one i know has heard of it.

X
 
Hi confused,

I am in Yorkshire - initially I was referred as my GP thought I had carpal tunnel- I have seen several specialists and had lots of tests before they came up with TOS - they cannot find the extra rib on the x rays so they wanted me to have physio before anything else due to the risks of the surgery.

Currently I have almost no feeling in my arm and limited use of my hand - I struggle to hold things and am always dropping things.

The physiotherapist has said that they aren't convinced that physio will resolve the matter but they are going to look at things again in a month or so.

Hippo
 
slightlyconfused said:
Fatpiggy, thats crap....being dump what does RSI mean?

Im hoping that it's worked as the symptoms has gone, my consultant said that not alot of doctors believe in TOS. Mum used to say that when i was as young as 6 i complained of pain, numbness and tingling in my hands but the doctors didnt know what it was and when i was diagnosed with M.E they just put it down to that......over twenty years later my brother explained my symptoms to his hand surgeon and he said he knew what it was and get me refered to him......i had it on both sides but he wanted Physio first and it has corrected my right side but the left continued to get worse so thats when we went for the surgery as i had nothing left to lose anyway as i couldnt ride my mare anymore as when she spooked my hand would either cramp round the reins or drop them :o

Who did you see?

It's nice to know that there are others with it as no one i know has heard of it.


Hi again,

RSI is Repetitive Strain Injury. I got mine hammering a manual typewriter at work because the secretary who was supposed to do it for me always claimed she had way too much work to do without mine as well. If she'd spent a bit less time painting her nails and checking her lipstick of course... Some doctors think that RSI is in fact a figment of people's imagination and only the weak-willed amongst us get it. Charming. I can easily irritate mine by using my mouse too much and breaststroke in the swimming pool really hurts my ringfinger. I can't spread my fingers properly (especially my ring finger away from the middle one), hence I can't get round a piano properly any more.

I actually saw a neuro chap for the diagnosis but was operated on by a doctor who specialised in blood vessels so was surrounded on the ward by people having their varicose veins done! I was only supposed to be in for a total of 5 days but ended up being in for 10 because the chest drain reservoir was being filled up in double quick time. I can remember pleading to be allowed home and that I would come back at night!!! I really was in despair and 10 days of anticlotting jabs didn't help my mood plus I had no visitors or anything and was lonely and so bored. But when I finally escaped of course, I went straight up to see my poor horse and she was so excited and happy to see me that she did all sorts of acrobatics around the arena and kept running up to me and scooting off again and throwing herself on the floor at speed.
Click to expand...
 
Hello!!! Me me me I have/had/have!!!
It started off when I was about 11, pain in the right arm, underside of forearm. Went to various physios, they said stiff neck was causing it etc but never made any difference if anything it made it worse. Pain progressed over the next 9 years to being down the whole arm, complete loss of feeling from the elbow to the wrist on the underside, weak hand etc. An osteo eventually noticed an extra rib buton the left side and all the experts he spoke to said it couldnt be related so left it again for a year or so.
Finally went to a consultant and had MRI (the most painful hour of my life as lying down forces my shoulder backwards which sets it all off!) who said carpal tunnel and wanted to operate but ive never had a problem with my wrist so was unconvinced. Then he said it would get better in 6 months...
Then went to see a fantastic consultant in london and he straight away knew the problem, turned out I had a much smaller rib on the right as well (the left one is HUUUUUGE) that was embedded and when I lift my arm above the horizontal it cuts off the blood supply, as does when I put my shoulder back to where it should be rather than stooped forwards!
Had a rib resection August 2011. Was told it would be an awful 3 month recovery but the whole thing was totally numb and rode etc after a few days, was completely normal in about 3 weeks. It was all brilliant until about february but I can feel it coming back now :(
The numbness is permanent and the muscle weakness is getting worse but the pain has also started coming back.
Its painful to lift arm e.g. driving I have to hold very bottom of wheel/one handed and doing proper dressage kills it after about 5 minutes.
So a mixed story really, it did work and then it didnt! Touch wood Ive never had a problem with the other side as I think its so big its more on the surface rather than imbedded in the nerves and blood vessels.
It sucks quite a lot as Im studying saddlery and with the muscle weakness it means I find it quite hard to turn the leather and grip things (cant do zips very well etc!) and it seems its only getting worse...
This thread has reminded me I need to get back to the consultant though!
 
Hippo, my phyiso was the same, he didn't think the op would work but agreed that i had to give it a go and all my research suggested that it was 50/50 and i really didn't think i had anything to lose....my consultant/surgeon at the Nuffeild is a Mr Giele, he sees alot of TOS case's and does alot of the surgeries so i was confidant i was in good hands as my GP had never heard of it before!

Fatpiggy....thank you i had heard of RSI but not the acrom thing :D a friend has it.....doctors can be annoying can't they. for years it was put down to the M.E i was told to deal with it! so glad that someone finally listened.

Olivia....i'm sorry it didn't work, that is one of my fears as my counsultant said that sometimes it comes back and they have no idea why.....he said that everything looked normal inside apart from the fact that my first rib was too close my collar bone and was making everything too tight so when i lifted my arm above my head within seconds it would go numb and feel like a dead weight then i'd get the shooting pains through my little and ring finger and cramping would then come......it was the same with lifting heavy things and my horse spooking and since it was my left side most affected driving became nearly impossible as reaching for the gear stick hurt alot.
hope your consultant has an idea.

xxx
 
Confused- the doctor and the physio are concerned about the amount of movement I have in my shoulder and elbow joints - when they are manipulating them they are able to put them past the point they should be able to and due to the lack of feeling I have in my arm I don't know when the joints are out of place.

I have been told that it has taken years for the damage to reach this point and that the 'cure' won't be a quick fix- unfortunatley I am not the most patient person and I get very frustrated especially when I can't do simple things like opening a bag of crisps.

I think after reading this I have even more questions for the specialist when I go back to see him.


Hippo
 
My surgeon was Ian Loftus http://vascularconsultant.co.uk/
I have to say he did go through all the negatives, he did say it might not work but then I had nothing to lose from it. Atleast I had about 6 months pain free :D And its certainly nowhere near as bad as it was before - yet!
I would recommend the surgery. I know everyone has different reactions to things but mine was far from the 3 months of agony they tell you about etc. It was only when I sneezed that I could have killed someone :p
 
Hippo...i have hyper mobity in my joints mainly my elbows and hands so first off another consultant thought that it was a trapped ulna nerve in my elbow area where is passes out of somthing and into another (medical words were used:o)
but when he ordered nerve conduction tests they came back normal so back to gp and the "Its M.E" crap :mad:


Olivia.....Mr Geile is fantastic, i can't recomend him enough even if it came back after 6 months i would have still gone through with it as six months pain free would be heaven! where abouts are you?


xx
 
Im in surrey but London is really easy on the train. I went to London Bridge to see him but had the surgery at St Anthonys as its only 5 mins from home and he goes there too. It was amazing to not have the pain. I had actually forgotten about it when I got the first twinge a few months ago. I had got used to just being able to ride for however long and not thinking about it. It was a 'hmmmmm, I recognise that pain' moment!
 
Thats what im looking forward to....my 21 year old mare is g spooker and i havent been able to ride her as she needs a contact and when she spooks i either cramp round the reins or hand went numb and i'd drop them:o so i was riding my brothers who thinks spooking is a waste of energy :D

Where i had it done was about an hour from me.

X
 
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