I suffer from thoracic outlet syndrome, which is the compression of nerves and/or blood vessels around the neck, arm and shoulder. I first was diagnosed with TOS roughly 6 years ago, when I thought I had whiplash. I would notice that my arm was going “dead”, and when I mean dead – I could not lift it, it was going a blue/purple colour and I would just lose all control of it.
I met with a consultant who did various tests on me, one of the test was to use a doppler on my neck and arm to test my heart beat. I started to raise my left arm up and I could hear my heart beat slowly going slower and slower, then suddenly as my arm was getting higher from my waist – there was no pulse at all. My consultant stated that I was a bad case, and usually they would do physio to assist me but I was straight for surgery. I believe it was 3 weeks later, where I was in theatre to remove muscle from my neck area. This in fact left me with two scars across my neck, in which I hated for years and gave me awful non confidence.
The consultant stated that unfortunately it is not curable and I was just thankful for the relief that it gave me.
Fast forward two years, although my arm wasnt going dead, I unfortunately wasn’t able to lift my arm up or move to neck to look to the far right. Again I went to a number of GP’s and due to the condition it is not something that is well known. I know through research that many sport stars have it, but I until 1 year ago I met someone else with it (MY NURSE!!) and even she said I was a bad case. So anyway…. lol, 2 years later I met with another consultant and he saw how bad I was again. My symptoms this time would be to raise my left arm, and not even to a 45 degree angle and my whole left side would shift to the right. With this in mind, I was given a very strong medication injection and also my shoulder was readjusted.
I woke up from my “surgery” and I was amazed not only could I move my shoulder up and down (like a bird yes!!), but I could also turn my head to the right. Silly things but it was amazing!!!
Over the past few months, every day I have had pain in my neck, my shoulder and my ribs – to the point sometimes I cannot sleep. The pain runs from behind my ear, down my neck, through my chest, under my boob, under my arm pit, my shoulder blade, all across my left rib cage and finally down my back. I have put up with it most of the time with hot water bottles and a lot of ibruprofen and stronger things, but I am so fed up of it all.
The last two weeks, I have seen a huge difference in my pain. Over these two weeks, I have had to twice in my lunch break from work go out to get some more clothes so I can change into – thank god for primark – as my clothes were constricting me so much, my arm was starting to go dead again, I would be dropping things and I couldn’t even sit.
On Thursday was the worst date since my first operation, every 20 minutes my arm would be going dead, I couldnt pick it up, I couldn’t feel it, the pain was pulsating down my left arm. The issue with TOS is that it can be linked with blood clots and thats what scared me. I dont want to make a fuss over this, but I had to this time, I had a cry with my manager and I just felt that I couldnt cope anymore. She was a star and calmed me down and I rang the doctors who told me to go to A&E.
I hate the idea of going to A&E as I dont see myself as an emergency, and the fact that its not the first time I have been with it – but I just feel that I am wasting their time. The last doctor I saw at A&E stated if I get worse to come back to them straight away, but I still felt like I was bad for doing it.
So I arrived at A&E and explained the situation I was in and was asked to take a seat. My Mum sat with me and I was getting in more and more pain, I couldn’t hide it from my face – my arm had shooting pains going down it, my back was tightening and then my arm was turning to a red colour, I could see the difference – my right hand was pale and the left was red…… then I could feel it happening, it felt like it was getting bigger and suddenly I had no control over my arm. I can’t count the amount of times, I had my arm on my leg and my Mum had to physically put my arm back on my legs as it had fallen off because it became so heavy.
I was called into the Nurse for a check up and she took my blood pressure and asked me a few questions, but I could tell by her face that she didn’t know what to do with me. The issue with this condition, is that it is for me on the left hand – the pain pulsates around the heart and previously the nerves have been affected so bad that it drooped my face (which people at work thought I had a stroke!). She asked me to raise my right hand to my face, which I could do, then she asked me to do the same to my left……………………. I could fit another head between the gap of my actual head and my hand, I couldn’t move my hand close to my face at all. So her reaction was a bit shocked, but also a bit “hmm I don’t know what to do” and she said that she would refer me to the GP doctor on site. I explained that I had been asked to come back if it does get this bad, and that sometimes there are doctors on site that know of this condition, but she kept arguing with me saying that there is no one on site and this referral will do. I thought okay fair enough who am I to argue with someone who knows more than I do.
The GP called me in and he looked excited and his first words were “you are absolutely not the patient for me, but I am absolutely fascinated by you – firstly I will tell off the Nurse who transferred you to me, secondly TELL ME ALL!!! I have only had 1 person ever with this condition and never as bad as you!”….. I first thought okay wow am I a weirdo lol and secondly, finally someone who understands!!! He at this point got someone else in to look at me and again was fascinated.
I was referred back to the hospital Doctor, who………. didnt know what he was doing and didnt know of the condition and thankfully I will say has given me strong medication and also a referral back to my consultant. Yay which would have taken weeks if I went through my GP.
So now I have the big big issue of work..
1 – getting time off to see my consultant
2 – being off 3 times in 6 months *sighs*
3 – explaining to management my illness
4 – also I was organising children in need, and took the next day off and unfortunately couldnt go through with CIN and this year the team raised just over £50, which I was shocked at as last year when I did it and was in, it was over £216!! – anyway thats for another day.
Luckily since Thursday apart from a few times on Friday my arm hasnt gone dead, but I would not want to experience Thursday again – I think it must have gone in that state nearly 40 times, I got to the point I had a few of my colleagues shaking my arm to get the blood back in.
I am sorry that this is such a long post, but it’s so hard to describe to someone the pain that I am in everyday. I am always the positive, smily person but underneath I am in pain everyday.