A blank document is staring at me from the screen of my MacBook. I’ve written down “How are you feeling?”. Since I returned to the Netherlands I’ve been asked this question many times. But I’m still not able to answer it to my own satisfaction. When I try to form a response my brain is telling me something like “Help. Error”, while my stomach clenches and probably gives the truest of all available answers. Since I can’t let people experience how my body reacts to their question I have to find words. But my brain keeps on reporting “Error”.
The short-term solution to my part-time paralysis is to smile after a moment of silence that feels really awkward to me, and respond “I still don’t know how to answer this question, it’s getting better with the pain in my foot, but I’m still sad about the whole situation”. This is a true answer, but never do I feel like it’s the whole story. I’ve decided to try and split up the answer to ‘how I’m feeling’ in different chapters and write them down. Before you read on, a warning: you’re in for quite a (personal) story. But in a way you’ve been asking for it ;-)
Which path to follow. Stripes on the floor of the hospital.
Part 1: Atraumatic avascular necrosis in the head of the talus bone of my left foot
The orthopedics doctor in the academic hospital of Rotterdam (my hometown in The Netherlands) confirmed what the podiatrist in Beijing already told us: I suffer from avascular necrosis in the talus of my left foot. The necrosis has a mysterious cause, since in most cases it is a result of a broken bone or sickle cell disease. I have neither, which leaves both the doctor and me guessing about treatment and prognosis. I keep asking “What can I expect? When can I walk without pain again? Will I be able to carry weight soon? I’m a photographer, when do you think I’ll be able to work again? Will I be able to climb a mountain in the future?” The doctor keeps saying “I don’t know, we’ll have to wait and see”, or “There’s almost no statistics on your case, so I can’t tell you anything that might make things clearer for you”, and, the worst of all “I can’t tell you if your bone is making progress, we’ll only monitor if things get worse”.
The logic behind monitoring degression instead of progression is as follows: my body needs to grow back bone marrow after some of it died off after a period of limited blood supply. This regrowing process will take two or three (!) years. On an MRI, you can see which parts of the bone contain less bone marrow, and is therefore the test on which you might see progress. However, an MRI, at least in the Netherlands, is considered expensive, and is, according to the doctor, not as interesting as me just telling him it’s getting better with the pain.
So, the doctor does not monitor progress.
Instead, he monitors whether my talus bone deforms or collapses. This might happen when the bone marrow doesn’t grow back or dies off even further, and I over-use my left foot. This ‘deformation of bone’ is monitored by taking x-rays every few weeks. Those x-rays don’t show anything (an x-ray does not show the necrosis itself), it just shows something when things get really bad. And since really bad means I’ll probably be screaming from pain anyway, I don’t see any point in his method. What I do want to know is if the bone is getting better. A regrown bone means I know I can travel, work, climb mountains again. Right now I can only guess if that’s the case.
So, how do I feel? Frustrated by the lack of information I get from my doctor, insecure about the healing progress and extremely disappointed in the medical 'go home and we’ll see' system.
This post is a follow-up on the following blogs:
To be continued and thanks for reading!