Tuesday, 22 November 2016

Living With Thoracic Outlet Syndrome. A Guest Post by Chloe

A woman holding a baby with title text overlaidIn our occasional series, Hidden Illnesses, we invite guests to talk about the illnesses that effect them, particularly those that aren't obvious on the outside. We hope to help sufferers and their families learn about the conditions and what they can do to help. Today, Chloe, from Life Unexpected, talks about the little known condition Thoracic Outlet Syndrome and how it has affected her life. Life Unexpected is a family lifestyle blog that follows a millennial mum. With posts about world travel, life with a toddler, general parenting and life as a working mum. 

Have you ever heard of Thoracic Outlet Syndrome? I hadn’t either. All I knew, is that at some point, during the first few months of my daughter's life, my shoulder had started to persistently cause me grief and I had a feeling it had been caused during pregnancy. 

I first started to notice an issue during everyday moments with my daughter. I’d be breastfeeding and suddenly would realise, that I was losing feeling in the arm that was wrapped around her. On random occasions, I’d be doing housework and would get tingling sensations running up and down my arm. There were also many times, that this tingling sensation was coupled with severe chest pain and I’d end up in hospital on an ECG machine, with fears that I was having a heart attack. Over the next six months, doctors were baffled with the symptoms I was producing. I’d wake up and feel faint and nauseous. My once strong arms had become weak and I struggled to hold my daughter and handbag, without losing sensation in my arm. I constantly felt like I had cling film over my forearm and started to struggle to sleep comfortably, or put my arm in certain positions at Yoga.

Diagnosing Thoracic Outlet Syndrome

My journey to diagnosis was long and irritating. I got turned away and prescribed paracetamol several times by doctors, before I finally asked to be referred to a physiotherapist, after it was mentioned that it could be a frozen shoulder. I struck gold with my physiotherapist, as she listened to my grievances and protests about it ‘not being a frozen shoulder’ and relentlessly tested my body to see what was wrong. After many weeks of arm and shoulder tests, massages, acupuncture and postural analysis, she threw in a title and told me that she thought I had something called ‘Thoracic Outlet Syndrome’. Straight away she referred me to see a neurologist and sent me to have tests, on the nerves around my shoulder.

Tests For Thoracic Outlet Syndrome

The neurologist confirmed her thoughts and I was sent on for further nerve studies, X-rays, an MRI scan and then the final test that officially diagnosed me; an ultrasound of my arm. The ultrasound of my arm, was very similar to a pregnancy ultrasound with gooey gel and a screen, where you could look at what was happening inside your body. During the scan, the Doctor lifted my arm in a variety of different ways and I was able to see what was happening to my shoulder and arm on the screen. It appeared, that whenever my arm was raised at certain angles, or my shoulder was pressed on in certain ways, my nerves would get compressed. This would completely stop the blood flow from going down my arm. This confirmed that I did indeed have Thoracic Outlet Syndrome. Tests showed that it was predominantly in one arm, but also mildly so in the other. Finally I had an explanation of the faintness in the mornings (I lie at a funny angle) and the constant weakness in my arm, when I held my daughter or a heavy handbag.

What Is Thoracic Outlet Syndrome

Thoracic outlet syndrome is a really rare group of disorders that occur when blood vessels, or nerves, in the space between your collarbone and your first rib (called the thoracic outlet) are compressed. This compression can cause pain in both your shoulders and neck, and also numbness in your fingers.
Thoracic Outlet Syndrome, or TOS, is actually more common in women then men. It usually starts between the ages of 20 and 50 and can be diagnosed, by a range of nerve and imaging studies.

Causes Of Thoracic Outlet Syndrome

There are many causes of TOS, including;

* Injury

* An extra rib

* Anatomical defects

* Tumours that press on nerves

* Poor posture that causes nerve compression

* Pregnancy

* Repetitive arm and shoulder movements

Apparently, doctors can’t always confirm the cause of TOS. For me, my condition was caused by poor posture during pregnancy. It was also caused by me being very stupid at the gym post-pregnancy, when my body was still healing. My biggest advice to pregnant women, is to take it easy and don’t lift heavy objects. Even if you feel like they’re not too heavy for you, they could cause lasting damage that you might not see straight away. Also, if you really want to get your pre-pregnancy body back quickly, consult a personal trainer. Do not attempt to do your old gym workout without checking it is safe to do so.

Symptoms Of Thoracic Outlet Syndrome

The exact symptoms that you can experience as a result of Thoracic Outlet Syndrome, will depend on whether it is the nerves or the blood vessels affected.

My diagnosis showed that my nerves that were being compressed. My symptoms included:

* Pain in parts of my neck, shoulder, arm and hand

* Numbness in my forearm and fingers

* Weakness in my hand

* Difficulty in lifting objects

* A limited range of motion in my shoulders and arms

If blood vessels are affected, then symptoms are varied slightly and can also include:

* Swelling of the arm

* Redness of the arm

* Hands that feel cold to the touch

* Hands or arms that become easily fatigued

Mother holding baby with the sea in the background

Treatment For Thoracic Outlet Syndrome

Luckily for me and others with TOS, the condition is treatable via physiotherapy, or surgery. Doctors might suggest surgery as more of a last resort. as it can involve having one or more rib removed. Physiotherapy focuses more on posture re-alignment and exercises to relieve grievances. Despite being treatable, relapses are possible and it can take a very long time for symptoms to completely disappear.

Living With Thoracic Outlet Syndrome

Although I’ve had a diagnosis for over a year now, my shoulder has got predominantly worse. Over the last few months, I have started to struggle to write. Holding a pen to paper and writing a few simple words, is exhausting for my hands. I find my arm and hand feel weak 50% of the time. I also struggle to lift heavy things or carry out activities that involve my arm, for long periods of time. My sleep is constantly disrupted and I now have to crack my shoulders in order to lie comfortably. My physiotherapist has given me some great exercises to do, however. I have also joined a gym, to have more one on one personal training, to help with my posture.

The worsening of my condition has predominantly been due to my change in work. I now freelance and work at home on a laptop. How do you sit when you hold a laptop? For me, I often find myself at a desk or on the sofa with my shoulders rolled forward (which causes compression), my back not straight and my body slightly slumped. Practising posture is so important. Hopefully, after a few more months of gym and physio, my symptoms of Thoracic Outlet Syndrome will slowly start to disperse.

Have you ever heard of Thoracic Outlet Syndrome? Let us know in the comments below.

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  1. Gosh, I've never heard of this condition, I will certainly pay a lot more attention to my posture now, I'm terrible for slumping on the sofa with my laptop!

  2. Just been diagnosed with TOS so this was really interesting to read, thank you. I'd love to know more about your exercises for it.

    I'm just waiting for confirmation about what is causing the TOS, so nervous times but I'm keen to find out and get on with living with it, not against it! :)

  3. Thanks for sharing about thoracic Outlet Syndrome. Actually thoracic outlet syndrome is a really rare group of disorders that occur when blood vessels, or nerves, in the space between your collarbone and your first rib are compressed. When I red this article I am very impressed and it`s really important info for all of us.

  4. I had never heard of this. Thank you for bringing it to our attention. There are so many of us with hidden illnesses

  5. I knew I had TOS for a long time before my diagnosis because of my PT. After my 3rd surgery for a slap repair on my right shoulder I finally got the go ahead for a rib resection. I am waiting for my surgery date where I will have my first rib removed along with muscle from my neck, I would say I am terrified but to be honest it couldn't come quick enough, the lack of mobility after almost 4 years is astonishing.

    It is a possibility that the pain won't subside or will return but I am positive. With out surgery it's a given that my situation will get a lot worse a lot quicker.

    How did I get here? I fell, direct blow to my right shoulder and chest, easy as that!

  6. I have never heard of this illness before but your guest commenter described things so well

  7. I'd never heard of this condition before. Thank you for highlighting it and outlining the things we need to know so clearly.

    Hazel Rea - @beachrambler


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