Blood Clot – Arterial Thoracic Outlet Syndrome
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This post is a bit of a departure from my usual forays into the world of personal finance. However it’s something I’ve been wanting to write about for a while. Arterial Thoracic Outlet Syndrome is pretty rare and probably one of those conditions you won’t have heard of unless someone close to you has suffered with it. I know I certainly hadn’t.
In 2011 I was diagnosed with a rare condition called Arterial Thoracic Outlet Syndrome after suffering from a blood clot
I think some of the ramifications of being diagnosed with a rare illness are perfectly relevant to personal finance. When I had the blood clot that started my two-year journey with Arterial Thoracic Outlet Syndrome I was in the hospital for two weeks and had to take a month off of work. When I had the eventual operation to remove my rib I was supposed to take three months off -I only actually took six weeks because I just couldn’t afford to be off any longer.
So maybe money-saving and rare diseases do go hand in hand – not being able to work because of this condition had a huge impact on my finances. From car parking fee’s for seemingly endless doctors appointments to time off sick after my operation, I am so glad I knew ways to make my money go further during those times that my income was compromised.
My Story – Arterial Thoracic Outlet Syndrome
Arterial Thoracic Outlet Syndrome Caused My Blood Clot
When I was twenty-three I had a blood clot. My right arm was swollen, mottled and felt very heavy. I wasn’t actually too worried about it and headed off to work as usual. As the day progressed my arm became more and more swollen. As soon as I finished work my boyfriend took me to A&E.
Two nurses looked me over and measured my arm. It was three and a half inches bigger in circumference than my left. Both agreed the most likely diagnosis was a blood clot, but as they couldn’t see any cause for one they advised I wait to see a doctor.
The doctor confirmed it was indeed a blood clot. But he had no clue how I’d come to have one. Blood clots are rare in the under Forty-fives and even rarer when presenting in the arms.
The nurses administered two injections of an anticoagulant into my stomach. They then told me to head back to the hospital the next morning where they would arrange for me to be admitted.
While in hospital a scan confirmed there was a huge clot in the main artery from my heart going into my arm. I was immediately hooked up to an IV which slowly delivered anticoagulants. I also started a course of oral warfarin.
The blood clot had to be dispersed very slowly to prevent it from breaking into pieces and travelling into my lungs. Or worse, travelling to my brain and causing a stroke.
I had blood taken every four hours while in the hospital to check my International Normalized Ratio (INR). A healthy person’s INR is usually around 1.1 or below.
When taking warfarin it should be between 2 and 3. I had to wait until my INR was 2.5 before I could leave the hospital. Blood was taken so frequently that the veins in my hands collapsed I ended up having it taken from my ankles and feet instead, which was pretty unpleasant.
Endless Tests
While in hospital I began having tests to try and determine what had caused the blood clot. As nothing was found during my two-week stay, I was referred to a cardiovascular specialist at Exeter Hospital. Tests continued including scans, X-rays and having dye injected into my arm.
The dye test was the one that was finally able to give a diagnosis. When my arm was raised the main artery and therefore the main blood supply to my arm was completely cut off. My top rib and collar bone were too close together. I had slept awkwardly with my arm raised and caused myself the massive blood clot.
Arterial Thoracic Outlet Syndrome Diagnosis
‘Arterial TOS is caused by clot formation in the artery to the arm (subclavian artery) in the area just behind the collar bone. Even when a clot forms, most people do not develop symptoms until the clot breaks into small pieces which flow down the arm to block arterial circulation at the elbow or hand. The clot formation is due to changes in the artery as a result of a congenital extra rib, called a cervical rib or an abnormal first rib.’ Taken from the rare diseases website
The next step after diagnosis was to have an operation to remove my first rib. This would prevent any further blood clots from occurring and allow me to stop taking warfarin.
Usually, the operation is performed directly above where the rib sits on the chest. Because I was so young the doctors decided against this as it would cause such severe scarring. They decided to go in through my armpit instead.
My Surgery For Arterial Thoracic Outlet Syndrome
I don’t remember being particularly worried or nervous about the surgery, I just wanted to get it over with. The worst part was it actually fell the day before my partner’s 21st birthday, so he spent most of his special day by my bedside in the hospital.
The surgery was a success although I had to stay in the hospital for a few days to recuperate and to allow any fluid to drain off of my lungs. I still have the piece of rib they removed in a sealed jar which I keep on my bookcase.
It was over a month until I could go back to work and three months until I was finally able to stop taking warfarin and having weekly INR blood tests. I had the dye injection test again just to make sure the blood flow to my arm was as it should be.
The surgery has left some lasting damage. As well as the scars (which are at least hidden in my armpit) some nerves were severed during the operation.
This means I can’t feel anything when touching my underarm. This feeling extends down the back of my arm and I can’t bear anyone touching it as it feels really weird. My right arm will never fully go back to how slim it was before the blood clot and will always be slightly larger than my left arm.
The veins across the top of my chest also really stand out where they were stretched from carrying extra blood when I had the clot. I get extremely self-conscious about these two things, although I think they probably stand out more to me than they do to others.
I am very lucky my condition was able to be treated on the NHS with immediate surgery despite taking 18 months to diagnose. Sufferers of neurogenic thoracic outlet syndrome are not so lucky and often live in constant pain.
The Cause Of Arterial Thoracic Outlet Syndrome
While there are no definite answers, we think my case of Arterial Thoracic Outlet Syndrome was caused by a car accident I had around nine months before the blood clot occurred.
While most people don’t know they have Arterial Thoracic Outlet Syndrome until they get a blood clot, those with an extra rib or an abnormal rib from birth usually present symptoms of the condition on both sides of their body, which I did not.
I was driving when the car accident occurred and it’s likely the impact, coupled with my seat-belt doing its job changed the structure of my rib and collar bone slightly.
The accident wasn’t my fault and while I was checked over at the time, this isn’t something the nurses in A&E were able to pick up on.
By the time I had been diagnosed with Arterial Thoracic Outlet Syndrome, I had already been awarded compensation for the accident which only covered some minor whiplash injuries and this included signing a contract to say I wouldn’t make any further claims relating to the incident.
The driver that hit me was supposedly ‘unconscious at the wheel’ despite driving almost 30 miles after he’d smashed into my car. That’s a whole other story though!
Having a blood clot and spending well over a year not knowing what had caused it was pretty scary.
While I was lucky I could be treated upon diagnosis of Arterial TOS I still live with the scars and lasting damage it has caused. What I thought was a small amount of whiplash from a car accident turned out to be something much bigger and much scarier.
Update December for 2017:
That pesky blood clot still continues to cause me issues six years on. I’ve recently found out that I’m pregnant and due to being considered at high risk for another DVT I will have to inject anticoagulants into the stomach right up until I give birth and for several weeks after.
It has also affected the choice of the hospital – I’d love to have my baby in my hometown but as I will need consultant lead care during the birth that won’t be possible.
Wow I’ve never heard of this before, how fortunate that they could remove your rib so you could stop taking warfarin! I do love though that one of the pics looks like you got it one of the magazines that pays you for your story- totally in keeping with your usual blog posts 🙂
Haha, it is, well spotted! I thought a full blown close up of the rib they took out might be a bit much for any squeamish readers out there.
Hi!
I’m so happy I found your article on ATOS!
I too, have this very rare disorder. I am
3,weeks from my surgery. I had my first rib
And extra rib both removed. I also had an
Anurism in my artery , which the doctors chose to
Remove part of the artery and replace it with
Part of my artery from thigh groin area. It’s been
A very slow and painful healing process. It’s
Been so difficult to find someone with the same story as mine! There’s so many more details
And procedures that I had during surgery as well,
But it would take up too much of your time.
Thank you again!!!!!
Shelly B
Oh gosh, sounds like you had much more complicated surgery than I did! I am so glad you found this post helpful and I wish you a speedy recovery. I also hope the surgery helps and gives you relief from some of the symptoms of TOS. Best wishes, Fiona
Shelly!! I too was happy to stumble across this and then I see your comment. I have ATOS on both sides. I’m not sure where you are but here in the US, there are only 5 vascular surgeons that treat this condition. So after countless dr’s and fighting with insurance I think I’m finally about to get scheduled for surgery. I’m like you and have no one to talk to or ask questions because even the doctors put you through the ringer because it’s almost unheard of and on both sides is just not a thing. I was rear-ended 20 years ago and sustained minor
whiplash. Well that minor whiplash turned into major major neck issues. That’s what took me so long to finally find someone who said this is not related to your neck! I would love to talk to either or both of you to see where you are on your journey as I’m about to begin mine. (The surgery portion at least) As a single mother of 11 year old twins, I’m terrified. I don’t know what to expect. What little there is on the internet is different and honestly there aren’t any cases I can fin like mine at all which frightens me even more. My email is mandymay.903@gmail.com I would be so grateful to hear from someone else who’s been down this road before.
This must have been so scary for you, thank you so much for sharing though! I guess they can’t retrospectivly award you a higher compensation pay out because fo it??xx
Unfortunately not. When you sign the forms for the compensation there is basically a clause that says you can never claim on this case again. Hey ho. It actaully took four years before I felt confident enough to drive again and that was only after having extra lessons!
Thanks for writing this . I’ve just found out I’ve got cervical ribs and waiting to see consultant to see what type of tos I have . Mine was made worse by swimming. Trying to sleep in a arms down position is hard ! I hope you are getting on well with your baby . thanks
I know this post is a little old but WOW it sounds just like my story with TOS. I actually have Venous and Neurogenic TOS and every day is a struggle to fight pain!!
My story: December 31, 2009 I was ringing in the new year and my arm started to throb. The next few days the pain was so much and my arm and hand were so large. It took two trips to the ER for someone to listen to me. I was in the hospital a few days to dissolve the clot and while they ran tests to see why I had such a huge clot- elbow almost to my heart. I was told I had TOS and a blood disorder called Factor V Leiden (sticky blood which causes clots), it was the perfect storm! Ugh! I then traveled 6 hours away St. Louis to have my rib removed, a cadaver vein put in, 2 blood transfusions done. I just found out by my mom that they almost lost me. My cadaver failed even after have it angioplastied. My arm is still much larger than my left arm, and it constantly throbs. My neck, back and ribs are almost always aching. I will be on blood thinners my whole life and I just turned 32.
I just had my 3rd child, my first time on thinners and it was hard. I had to inject my stomach twice a day and I would cry almost all the time when I got bigger. It was worth it in the end but I don’t forget the pain I felt not the knots and bruises I had.
Bless you on your journey!!!
[…] with any interesting health-related stories. Due to complications after a car accident, I had a blood clot aged 23 and subsequently needed one of my ribs […]
Got diagnosed with VTOS and a clot in my right subclavian vein in November 2019 at age 21! It was the craziest and scariest experience of my life. I also had the first rib resection surgery done. Thanks for sharing your story. It helps to not feel so alone with a rare disorder.
Thank you for your kind comments. I hope you are now well and on the road to recovery after the surgery. It is such a scary thing to experience and to be honest there’s not a whole lot of information out there as it is so rare. Glad you enjoyed reading my story 🙂
Leaving this comment in hopes that there is someone that had this years ago like myself ( 1992-93)
After surgery extra rib removed , L subclavian bypass, brachial artery repair never did PT or took a blood thinner through pregnancies. Last 2 years returning of some symptoms, and weird pressure taking aspirin a day since 2021 and currently in PT to help regain strength and lessen symptoms in shoulder, neck& arm . Wondering if this will help and if anyone had VTOS years ago and how they are today ?