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Posted by on Aug 18, 2016 in CRPS / RSD | 0 comments

No longer a patient, but still have CRPS? (18.08.2016)

No longer a patient, but still have CRPS? (18.08.2016)

I’m in shock. I’ve just been told that I’m no longer an outpatient at the community hospital where I’ve been treated since March; first for a Colles’ fracture (broken arm, near the wrist), and then – once I was finally diagnosed – for Complex Regional Pain Syndrome (CRPS; also often known as Reflex Sympathetic Dystrophy or RSD).

My official ‘treating physician’ at this hospital is the one to whom I was assigned for follow-up, after the fracture. But the physician who’s been treating me for CRPS – the rare disease that was triggered by the fracture – is a neuro-anaesthesiologist at the same hospital.

I had to go back to se the original treating physician today, for what I expected would be a regular follow-up appointment. Instead, my now-former treating physician advised me that there was nothing else that this community hospital could offer me as treatment for my rare disease, so they were discharging me.

As of this appointment, I’d no longer be an outpatient at this hospital. And because no physician at the hospital would be following my care (i.e. treating me), my medication plan – which my neuro-anaesthesiologist and I had developed together, after multiple medication failures (including Lyrica, with and without numerous other medications) – would also end. So once I’d finished the medications I had left, from the last prescription from the neuro-anaesthesiologist, I’d have no more medication plan.

The neuro-anaesthesiologist at this hospital couldn’t keep treating me for pain if the original treating physician (who’d referred me to the neuro-anaesthesiologist) discharged me from ambulatory care… That was it for me as a patient at this hospital.

I live in a suburban area of a large city which has not just one, but two, medical schools and multiple associated hospital centres. The no-longer-treating-me physician didn’t even suggest referring me to a larger hospital, until I somewhat incredulously asked: “What do I do next? How will I keep working without any treatments?…”

At least he gave me a referral to a pain clinic at a much larger hospital, but now I’ll have to now deal with another hospital – by myself – and I have no idea how long it will take to be seen there… the next little while should be very interesting, once I’ve finished all of my current prescriptions. Before I had my current medication plan, I was vomiting from pain every few hours – always interesting when your workplace is carpeted!!! I really don’t want to go back to that level of pain again…

Somehow this just doesn’t seem right. Why couldn’t the local hospital keep me as a patient, until my rare disease case was taken on by another hospital? The no-longer-treating-me physician couldn’t answer that question!

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