Have you seen this before? Can you help?

I have a friend, George (not his real name), who, apart from being on dialysis, has an unusual bursa problem. Talking about it with him, it occurred to us that other people may have the same thing and have some advice about how they manage it.

IMG_8236

George’s swollen bursa

scapulothoracic-bursitis-shoulderThe problem is with his infraserratus scapula bursa. A bursa is a thin cushion of lubricating fluid located at a point of friction between a bone and the surrounding tissue/bone. George’s problem is the bursa just below his right scapula (that is just below the wingy part of his shoulder). Its job is to lubricate where the shoulder rubs against his rib cage.

 

IMG_8233

Time for draining! – About 150mls of bursa fluid and blood

In his case, his bursa decided to fill itself with fluid, to the point where it has become a 150ml-plus bag of fluid extending down the right side of his back. At first (when it was small and manageable), his local doctor worried that it was cancer, so he was referred to a specialist surgeon, who ordered an MRI of the area. It identified the bursa as the problem, so his cancer worries disappeared.

But how to deal with the bursa? It was not painful, just annoying and embarrassing. After some detailed research (using Dr Google and his army of medical partners, here and here), he discovered that it probably began as an overuse problem, following 20 years and hundreds of hours extending his right (fistula) arm for dialysis. This is not a common problem, but it is (yet another) known outcome of long-term dialysis.

1-infraserratus-bursaAs an interim measure, the surgeon drained much of the fluid and sent him home. Over the next three years, he had several Cortisone injections aimed at stopping the fluid flow and the bursa drained about once a month. Nothing worked: it just kept coming back, each time a little larger. It is now interfering with his sleep (and dressing – T-Shirts especially!). He finally decided to see if there was a better way to deal with it. He saw several specialist surgeons, most of whom recommended removing it surgically.

The trouble is that as a long-term dialysis patient, George has all the co-morbidities associated with that: AF and other heart problems, compromised immunity, bleeding and general fragility that makes an operation quite dangerous. After long discussions with his Cardiologist, he has decided to wait about six months. He has been told that the bursa may reach a certain size, then stop growing (when the fluid pressure on the bursa bag holds back the production of more fluid). This is not certain, but he’s giving it a try.

If it does not stop expanding, then his Plan B is to risk surgery.

crowdsourcing

Crowdsourcing! Tapping into the wisdom of the crowd.

But even though it is rare, surely someone has or had something similar. And perhaps they have found a better way to manage it. That’s why he decided to put his story on BigDandMe, to reach as many dialysis patients as possible, and maybe find another way to deal with it.

So if you can help, or know someone who may be able to help, please add what you know to the comments, or email me directly (see About).

Who knows what can be achieved with the power of crowdsourcing!

 

Update

img_8252George’s bursa was aspirated (drained) a week ago and the doctor collected 220mls of fluid and blood.

img_8254It seems that there is no limit to how big the bursa can get. George has now decided to talk to a surgeon about having it removed. But he is still keen to hear from others who have experience with this kind of problem and would appreciate any further feedback or advice.

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