My Story – Thoracic Outlet Syndrome

My apologies for the lack of content on my blog and website over the last few months but I had to have an opperation which meant that I have not been able to paint as I have spent most of my time confined to bed during my recovery.

Basically, most of my life I have been suffering with pains in my neck, shoulders, arms and hands. Over the years it got worse to the point where I couldn’t hold my arms at shoulder height for longer than five seconds without pain or getting tingling in my hands and for an atrist you can imagine how difficult and frustrating this has been.

It all started when I was 15 and sought advice from a physiotherapist but they had no idea what was going on with me. Many visits to doctors for 25 years with severe headaches and pains but could never find a diagnosis. I was then involved in a car accident 10 years ago where I suffered a whiplash injury and after x-rays showed I had Cervical Ribs – ‘extra’ ribs located above the ‘normal’ first rib.

I remember one day waking up whilst lying on my front with my arms above my head in chronic pain where I was rushed to hospital and once again the doctors could not find anything wrong even when I suggested my cervical ribs they basically fobbed me off and ignored me. After many more visits to hospitals and doctors, finally in 2008 I was diagnosed with Thoracic Outlet Syndrome (TOS).

I had Axilla Bilateral Rib resection in July and Dececmber 2008 where they removed sections from my cervical ribs. The operations were successful but over the last couple of years I began to get severe pain again where I stuggled to lift my arms for any length of time. I spent years again going full circle back and forth to doctors and hospital where I was at one point told that I might have Multiple Sclerosis, (MS), after brain scans which was later confirmed as scaring from my previous whiplash injury. Finally, I demanded my doctor to refer me to a surgeon familiar with TOS in my area and he did tests which showed my arteries and nerves had basically stuck to the scar tissue from my Axilla Bilateral Rib resections which were restricting the blood flow. This brings me to September this year where I had a scalenecomy on my right side where the nerves and arteries were ‘unstuck’ from the scar tissue.

It has been a painful couple of months and still is where I am now suffering from Complexed Regional Pain Syndrome (CRPS) following the operation. My pain is now under control and I have started to slowly get back to my painting so hopefully you will be hearing more from me in the future.

Previously the internet was nothing like the resource of information it is now but information on Thoracic Outlet Syndrome is still quite sparse so if you need any help or information about this condition then please do not hesitate to contact me, koo@koo.gallery

2 Comments

  1. TIA (THOW)

    Well done you for doing this, you will be surprised how many people who need this information will be reached eventually.
    Personally I know nothing about this Syndrome but I do know that more blogs like this will surely help a lot of people.

    When i was really ill (about 6 years ago now) with septicemia, my family were called in because they didn’t think I would last another night (I was in a coma) this was traumatic for them, I was cool because I was asleep! lol

    But not many people know just how dangerous septicemia is, and what the signs are, so I also wrote a blog and it reached so many people.
    So, good luck to everyone who is suffering and hoping they also find you! x

    1. Koo

      Thank you for your comment Tia, it is appreciated and sorry to hear about the terrible time you and your family had endured during your illness.

      I certainly do hope this blog will reach people and give them inspiration to know that there is help and support out there and that they are not alone. There was a time when I thought that I would suffer all my life as it took year to be diagnosed but now, thankfully, with the right resources I was able to come through.

      Thoracic Outlet Syndrome was not as well known as it is today as more and more doctors now acknowledge that it does exist. There are still only a handful of consultants that specialise in this condition and is their main field and so if presented with this problem it is important that you do your research in finding the right one. I do feel passionately about making it known as there is nothing worse than feeling that you are going mad knowing that something is wrong when professionals continually tell you that any examinations they do are inconclusive. You are not alone!!! x

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