Those of you that know me will know that I have complained of shoulder pain for a while now.
Sometimes it can be so painful that I’ve had to take time off work, because some days it’s so bad that I struggle to brush my teeth, reach for the TV remote or take off my jumper.
But before I go into that, I have to take you back to November 2018 and tell you a little story.
In November 2018 I flew to Ireland to see my niece and nephews. Messing around, and showing off my fancy yoga moves (I’m also a trained yoga teacher), I decided to balance my six year old nephew on my back while carrying out a very tricky arm balance – crow pose.
Immediately after, I felt something wasn’t right and over the course of the next few days I noticed increased pain, swelling and discolouring in my right arm and hand. By Sunday evening (two days after the arm balance) all the veins across the front of my right shoulder were very visibly showing – like someone was shining a light through my back, my arm was really swollen – but I was convinced I’d just sprained it and took some pain killers.
Two days, after returning to the UK, the pain and the swelling continued to worsen and on Tuesday morning (now 72 hours into my deep vein thrombosis) I went to the doctor. I was immediately rushed in for an ultrasound and they confirmed that I had deep vein thrombosis and was by this point ‘lucky to be alive’.
I was prescribed six months of blood thinners and was then referred to the hospital.
To determine the cause, over the next few weeks and months I underwent a series of tests including: 11 blood tests, two more ultrasounds and an X-Ray, and was eventually signed off from the hospital with what I now know was a misdiagnosis in January 2019.
The cause of the clot they said, was the contraceptive pill, in addition to ‘excessive weight bearing on the arms’ from yoga.
Relieved to have a diagnosis, I didn’t ask any further questions and was happy to continue my course of blood thinners until May, draw a line under this horribly scary incident and return to my yoga practice.
Once off the blood thinners my right arm was still larger than the left, still discoloured and I was still in a lot of pain, and by October 2019 the pain was so bad I began injury rehabilitation and strength training to try and relieve it.
Although this training helped hugely, strengthening my back muscles to support my front muscles and stretching out my pec major, it was around this time that I began to notice that my arm was feeling swollen and tight after I went for a run, or after any vigorous physical activity. I had noticed other triggers too – like the position I slept in, and spending too much time on my mobile phone (triggers I now know for a fact will have been impacting on my condition). And so, I started to track this shift with a tape measure.
Documenting up to an inch difference in size, and seeking advice from a sports injury specialist, I returned to the doctor in February 2020 and was referred back to the hospital – this time with a different haematologist. An over the phone (thanks to COVID) appointment in April 2020 diagnosed me with suspected Subclavian Vein Thrombosis or Paget-Schroetter Syndrome.
Subclavian vein thrombosis, or effort thrombosis as it is also known, is a relatively uncommon condition that affects young, active, otherwise healthy individuals.
Listening to the evidence I had given around my very serious yoga practice (weight bearing on the arms), and how it was swelling after repetitive motions of the arm with activities like running, or spending too long scrolling on social media, the haematologist concluded this was a strong contender for the diagnosis. Could this mean what I was told in November 2018 was wrong? In part, yes.
I was told I would need an MRI with contrast to determine this, but because to COVID I would be waiting at least six months to get it.
Six months later in August 2020 I finally got my MRI scan, and after four months of tears, phone calls, unanswered messages, letters and changed appointments (thanks COVID), that December I was told the most distressing news: that the hospital had given me the wrong scan.
Although it showed some interesting evidence around my shoulder (again, that I now know is all evidence to support the diagnosis I have) it wasn’t what they were looking for – you see I was meant to have contrast in my veins so they could see more of the inner workings of what was going on.
In January 2021, after more tears and upset that I was no clearer on my condition and now with still no right MRI scan in sight (again, thanks COVID), I was referred to a cardio vascular specialist and was now under his observation as well as the haematology department. The reason being, they felt the cardio vascular consultant could maybe rule out this suspected condition before I needed the MRI scan, and then I wouldn’t need to wait any more.
They were wrong.
In February 2021 I had my first cardio vascular appointment and at the end of March 2021, I had two further ultrasounds and the MRI with contrast.
Still not armed with enough evidence I had one final test in May 2021 – a Venogram (X-Ray with contrast where my veins show up on the images).
This is the test that finally led to the proper diagnosis that I had been waiting for since November 2018.
I had Subclavian Vein Thrombosis.
This was the cause of my DVT in 2018 and this was what was still causing me all this trouble after all this time. The contraceptive pill (in my case) had nothing to do with it.
The venogram showed that when my arm was in an upright position, my first rib and collarbone moved together so tightly that they pinched the Subclavian Vein that ran through them and literally shut off the blood supply in the vein – meaning no blood was flowing through that section of the vein when my arm was upright or in isometric contraction (when undoing a bra, taking off a jumper, holding a mobile phone, driving, sleeping, running, lifting weights, doing crow pose, downward dog, headstand… the list goes on.)
You see Subclavian Vein Thrombosis is a rare form of thrombosis common to athletes (baseball players, weight lifters) and in my case, it happened as a consequence of Thoracic Outlet Syndrome: where blood vessels, veins in the body (for me it was the subclavian vein) are compressed by the rib, collarbone or neck muscles at the top of the thoracic outlet (top of the shoulder and neck).
Compression caused by an anatomical defect (again in my case my first rib and collarbone are too close) coupled with vigorous use of my arms in repetitive overhead positions and heavy lifting through yoga and mobile phone use (RSI) and anything else listed above, created a repetitive injury of the subclavian vein and friction – which led to my blood clot.
So that crow pose with Larry on my back? Quite possibly the final nail in my thrombosis coffin.
Now don’t misinterpret me – this isn’t me saying yoga isn’t safe – there were many factors that played into this condition for me, and none of it would have happened if I didn’t have this anatomical defect. It’s because I have that, and because on top of that I was doing arm balances that my entire muscle network wasn’t strong enough to do, and because I did them repeatedly – I overdid them, and because I’ve spent half my life on a mobile phone for the other part of my career, and the long distance running where my arm was held in a position for two hours at a time, it’s because of all of this that the thrombosis happened.
And I’m not a doctor, by any means, so I’m not going to try to explain this any better than this article already does – if you want to know more about this condition, or you are worried you may suffer from it, please I urge you to read this fantastic article: Comprehensive Management of Subclavian Vein Effort Thrombosis.
This diagram (taken from researchgate.net) is also a great representation of what is going on with my arm.
So what now?
Today (14th May 2021) I had a call with the Cardio Vascular Specialist at East Surrey Hospital who has advised me that the best treatment for this condition is a small operation to remove part of my first rib – to create space around the vein. Plus a nerve conduction study to make sure there’s no nerve damage too.
He said because my conditions were “fairly marked and significant” and my venogram showed a “very obvious case of Thoracic Outlet Syndrome”, and because it was impacting on my daily life he thinks surgery would be the right option.
On Tuesday he will discuss this with a specialist at St George’s hospital, and I now await another call, so watch this space.
I’ve waited to write this blog until I actually had the answers about my condition that I have been suspecting, really all along, and I wanted to write about it not only to raise awareness but to send a message to you.
And this is my message to you:
If I’ve said it before, I have said it a million times: don’t ignore chronic pain.
As a yoga teacher I am fortunate enough to be extremely in tune with my body, ok so I didn’t listen to all the warning signs the first time around, but I’ve damn well listened to it since.
After my misdiagnosis I knew something wasn’t right, and I persisted, pestered, badgered and pleaded with the NHS to help me find the answers I needed – and it paid off.
Chronic pain is something, for some reason, that we just deal with – we get used to it, it’s like an old pair of shoes that we know we really should replace but we don’t. We ignore it, or even worse we acknowledge it and do absolutely nothing about it. I have been in chronic pain with my shoulder for years – long before the DVT – and I now know why, this condition was spending all that time building up in there, but it took a near death experience for me to say “oh hang on a minute”.
So I urge you, if you are in pain, seek specialist help – from a doctor, and then once you have the answers seek help from a physio, or a sports rehabilitation coach.
And now I would like to thank you for taking the time to read my story.
Subclavian Vein Thrombosis is a rare condition, and because it’s so rare, this condition and ones like it are extremely hard to diagnose.
I can’t count the number of hours I have spent, worrying, stressing, and not knowing what is wrong with me, the number of hours I’ve spent scouring google to find answers and advice – and this is the reason I felt it appropriate to share my story.
I hope that by sharing my experience, I can help other people with this condition, so that they don’t have to go through the pain, torment and stress that I have been through the last two and half years.
Help educate others by sharing this article with your friends and raising awareness of Subclavian Vein Thrombosis.
If you’d like to support someone who has suffered from a form of thrombosis you can donate to the Thrombosis UK charity here.
I’d also like to say a special thank you to my Injury Rehabilitation Coach David Richardson – without you I would not have gone back to the doctor in February 2020, and without you I would still be in severe chronic pain. You have done so much for my shoulder, my strength, my physical health helping me manage this condition and as a result my emotional health too.
David Richardson trains in Godstone and is an Injury and Rehabilitation specialist who has experience training professional world class athletes and olympic medal winners, and now has experience dealing with Subclavian Vein Thrombosis sufferers (haha!) his website can be found here.
UPDATE – 30th June 2021
So I went to St George’s Hospital and had a great meeting with Professor Loftus – an expert in this type of thrombosis and he had all the answers for me, he said:
Yes I had been misdiagnosed.
Yes the doctors at my surgery and East Surrey Hospital did not know enough (and in some cases anything) about my condition and that was common for many doctors, haematologists and specialist across the country.
Why? Because my condition is so rare.
He said he travels the country doing talks on my condition – raising awareness and that any awareness I can raise too could only be a good thing.
He said because I have only had the one DVT, because I am not currently in persistent daily and chronic pain and am managing my symptoms, he would rather I didn’t have the operation – as I am young, and the operation is big, and as I am in a good place he doesn’t want to make anything worse for me.
He said however – if symptoms worsen then the operation may still be needed and I have a follow up call with him in September.
He confirmed that use of my mobile phone, building too many of the front muscles through yoga and also the types of arm balances, including the incident with my nephew on the back were all the contributing factors to this.
And I cannot tell you what a relief it was to finally hear a professional confirm all my thoughts that other specialists have laughed in my face about over the last few years – yeah, ok I feel pretty smug about it to be honest.
And my message still stands: you know your body better than any doctor – so don’t take their word for it if it doesn’t FEEL right to you.
UPDATE – 7th January 2022
My follow up call with Professor Loftus confirmed that for now I am fine, and I can continue to manage my condition through sports rehabilitation.
The risk is still there – if I ever have another DVT I will need to probably have the operation, if I start to suffer chronic irreversible pain, I may need to have an operation – but I may also be able to just simply manage the condition myself as I am now doing.
The nerve conduction study that was requested in May 2021 and (finally) was given in November 2021 by Kingston Hospital, confirmed no nerve damage.