Three years on

I've tried to keep away from the subject of SAVT but feel that it's now time for an update.  While I was at the 'book event' in Sydney, I sat next to J, whom I'd heard had had something like a subclavian vein thrombosis several years ago. I was curious, as it's not often you get to meet fellow members of the Order of SAVT. I said to him, 'Excuse me, can I ask you an odd question?' He agreed, and I asked, 'Are you the person who had a blood clot in their shoulder?'

J said that he had, and told me of his own experience of repeated forays to the Emergency dept of a private hospital where they were suspicious that his symptoms of a leaden, swollen arm were indicative of a subclavian vein thrombosis: i.e. in the vein that runs between the collarbone and the first rib then feeds into the axillary vein in the arm.  He had a number of ultrasounds on subsequent hospital visits, and only one indicated the presence of a small, kidney-shaped thrombus.  They also thought he might have some kind of aneurysm.  He was given some drugs and the arm duly went down and things returned to normal.

I was intrigued by a number of aspects of J's story.  Firstly, his description of the clot: 'it felt gross, nothing describes it but gross.'  As a DVT sufferer, what characterises the experience of the clot more than anything else is its feel, rather than its appearance -- which might be one of the reasons why there can be such a discrepancy between your sense of immediate danger and that of the person examining your arm (apart from the fact that it's happening to you).  One of the best descriptions I ever read was from someone with a leg DVT in a chatroom: 'it felt like piece of wood with a nail through it.'  This is my description from a narrative I wrote about my experience of the clot, from its early stages:

My left arm remained cool, bluish, leaden and slightly inflated, like that of a corpse. Once elevated, the swelling usually diminished, but the inside of my hand remained blue.

And later, during the chronic stage:

By Wednesday my arm had burgeoned into something that would have looked more appropriate on Quasimodo or the Elephant Man. Puce in colour, woody to touch and leaden in weight, it was three or four times its normal size. Engorged veins with standout capillaries embellished my chest now as well as my arm.

The other thing that struck me about J's story is that it could have been my story if the hospital staff who initially saw me exercised more suspicion than they did.  It's the luck of the draw, I guess, but J knew one of the doctors on staff (always a plus to know a member of the medical profession if you're a patient, even if it's just for long distance phone advice).  On the basis of his symptoms, which they recognised to be venous, they kept on running tests till they found what might be the cause.  In my situation, because the original ultrasound was clear, my symptoms were repeatedly explained away ('arm swelling', 'anxiety') on my second and third visits to the Emergency dept.  The ultrasound technician did urge me to come back if my symptoms didn't go away (tho unfortunately the only note she wrote in her report was 'no thrombus visualised'), but the Emergency staff seemed to impose some hierarchy of 'diagnostic testing/technocratic wisdom' over 'clinical observation/patient experience.'

The other thing, apart from the fact that since an Emergency doctor knew J and might therefore have seen him as a credible witness to his own symptoms, seems to be that the culture of a large, busy, overtaxed, teaching, public hospital may have been against me as a young, otherwise healthy and apparently 'anxious' patient.  I might have fared better if I'd gone to the Emergency room of this smaller, private hospital, though interestingly, it's a hospital that medical friends of mine have warned me against, presumably because it doesn't have the facilities of larger, teaching hospitals.

Update 2: while I was in Sydney I went to have an ultrasound of my left shoulder/arm to check for the patency (functionality, lack of obstruction) of the veins.  I've done this every year around about the time I successfully received clotbusting drugs which 90 % cleared the clot -- in fact, 16 July is my clotbusting anniversary, hence today's post.  I should note that my arm is asymptomatic and has been so for maybe two and a half years (in fact, it has improved over time, if anything) -- i.e. it's wholly functional, and is not bluish or subject to intermittent periods of swelling. 

I asked for a referral letter for an ultrasound from one of my work's GPs.  He was rather surprised that I would bother to have an ultrasound from my old specialist's rooms in Sydney when I could have one for free from the local hospital.  Feeling like a pedant, I said I'd rather have one there for continuity and that they had all my records, though one of the main reasons was that I'm pretty skeptical about what's on offer at the local hospital here.  And they do actually specialise in this clot and have cutting edge technology and all that at the specialist's.

I have to say, I'm something of a fan of the humble ultrasound.  When you're a patient, testing of any sort is one of those grand theatrical moments amidst the boredom and drudgery of ward life you look forward to.  Suddenly, you and your veins are up on a screen for show.  My angiograms in hospital were definitely amongst my most interesting health moments, though the ultrasound, as J and I agreed, holds its own fascinations.  It exposes what seems like a remarkably aquatic terrain, where your pulse is magnified as if coming up from an ocean floor.

When I went back to the specialist's rooms, I found out that my favourite technician, the one who ultimately found the clot and did all the subsequent ultrasounds had gone, which was a shame because she was so good at her job and so gracious in the doing of it.  The technician in her place was good, but kind of anxious about the whole subclavian deal (my impression is that it's a tricky vein to image) and kept on losing the vein when she moved my arm into different positions and so forth.  Anyway, she took about eight images of the vein, following the same positions as the former technician.  What was interesting about the images was their similarity to the set from the previous year; as far as she could see, there was absolutely no change to the vein.  Which was pleasing to me, given that I' ve increased the amount of physical activity, including upper body exercise (i.e. yoga) over the past eighteen months.

I should explain for those who might have joined this blog more recently that subclavian vein thrombosis in a younger person is often attributed to trauma of the vein through exercise, particularly that involving overhead arm manoeuvres.   In many (probably most) people, the vein is compressed between the first rib and the clavicle when you lift your arms to shoulder height.  (In my case, the vein is partially compressed but does not close totally in overhead positions -- i.e. there's always blood flow.)  Some people may also have an obstruction in this space such as an extra rib, a rib or clavicle fracture or an overdeveloped chest muscle that predisposes them to traumatising the vein in this position.

When I was finally admitted to hospital, the medical staff insisted that I must have some kind of obstruction to have developed this thrombosis and were asking me to sign up for surgery to remove the first rib and reduce pressure on the subclavian vein even before they ran any scans.  No evidence was ever found of any obstruction or of an unusual degree of compression in my shoulder, though there was a narrowing in the subclavian vein at the level of the first rib.  Personally I believe, as I stated to the medicos at the time, that I developed the clot from sleeping with a cat (Jessie, 7 kg) in my armpit and across my left shoulder, cutting off the blood flow and causing stasis for several hours, (which my GP described as a form of 'pub drunk syndrome', i.e. where a drunk fall asleep with their arm over the back of a chair). The continuing lack of evidence of any obstruction seems to support this view. However, they prefer to believe I got the clot from standing on my head at yoga, as it fits in with their notions about sporting activities and heavy labour as the cause of these clots (and no, I don't have any known blood disorders either).  It's possible that yoga may have contributed in some way, but I did habitually sleep in that position with the cat.

Anyway, I know feel entitled to celebrate a three year victory over my anti-surgery stance.  Interestingly, one of the landmark studies (Machleder at UCLA) that promotes an aggressive, surgical response to this clot used the three-year mark period to claim venous patency.  Two later conservative studies  (i.e. non-surgical, anticoagulants only) used a five-year period and also claimed good results (Heron in Paris, and Prandoni in Italy).

I've been reminded of this stuff again watching the 'Dr Death' saga.  I don't of course think I was treated by any Dr Deaths; everyone likes to say they're encountering sociopaths in the workplace these days but Dr Death genuinely seems to have been one.  However, the whole train of discussion about hospital efficiencies and the revenue from surgery (including the interesting fact that some patients made more money for the hospital if they died after surgery) has been fascinating.  I was suspicious that the surgical impulse in my case was being fed by financial and ego interests, as well as the prospect of a good training opportunity for younger doctors in a relatively rare procedure.

When I went to the vet's the other day, I discussed my cat Jessie's heart murmur with the vet.  I've always thought that it would predispose her to a heart attack, but apparently it's more likely to throw an embolism. 'What -- a pulmonary embolism?' I asked the vet. She said that pulmonary embolisms were 'easily absorbed'; what my cat is more likely to develop is a saddle-backed thrombosis, where an embolism blocks the femoral artery.  A tendency toward unusual thromboses -- like mother, like daughter!

Comments

[Account Deleted]

Fascinating stuff, El. I've only ever seen one axillary vein thrombosis. It was in an Australian aboriginal woman. In my experience, as well as that of our local ultrasonographers, aboriginal Australians do not have the same tendency to clot as we Europeans do. In the case I diagnosed (blush) the woman had a very rare underlying disorder unrelated to cats or yoga.

[Account Deleted]

PS - I have seen venous thromboses develop in the legs of elite MTB riders, due to a combination of an inherited tendency to clot and vigorous exercise.

I wonder if it is possible to get forearm DVTs from overly vigorous blogging?

[elsewhere]

Actually, I read a very interesting article (during my mad vascular phase) about vascular complications in athletes and cyclists were mentioned as a prime candidate for something-or-other because of over-vigorous legwork (+ also penile thrombosis!). But funny you should say that about blogging -- I spoke to Dr Geoff, the fly-in sports doctor, and he thought I was at greater risk for an 'e-thrombosis' from too much computer work with bad posture than I was for a 'paget-schroetter' style SAVT. Also, one of the physios here had a patient who got an arm clot from an exercise she gave him with a band round his shoulders. Interestingly, she guessed correctly what he had when he rang her and pointed the patient in the right direction...

[Jude]

Pretty staggering to think that it may have been caused by the weight of Jessie. If this were the case, I can't understand why it isn't a more common occurrence. There are plenty of people who habitually sleep entwined with with partners or infants - you would think they would all be at risk.

[elsewhere]

There are other cases reported of people developing a thrombosis from sleeping in an unusual position, particularly when drunk. It could just be a freak occurrence in my case, it could be the particular idiosyncrasies of the position in which I habitually slept with the cat (e.g. arm at close to a 90 deg angle) or it could be something else. All sorts of unusual causes of this thrombosis were cited to me, such as a policeman jumping up through a manhole, a woman raising her hands when she learned to dance, surfers carrying surfboards under their arm, ABC camera operators carrying cameras, hairdressers blowdrying hair -- it was fairly freakish territory!
Another interesting thing I was told is that more people may have these clots than is realised but the clot resolves or the veins re-route (collateralise) round the obstruction.