The sharp end of the dural puncture

As the pain of a sudden onset dural puncture headache was searing and spreading like hot molten metal I forgot what I was there for. The pain of the contractions disappeared into the head pain. Three failed epidurals, two spinal blocks, and a few incisions into a caesarean section the head pain was all consuming, the lights surreal and too bright, and the only sound that I could hear through the ringing woolliness was my own screaming. My head. Please help me. “Patient not coping. Converted to general anaesthetic. Delivered of female infant.”

Recovering from the anaesthetic I forgot that there had been a baby, only remembering the headache, which seemed to have gone. In morphined confusion I cried a bit and turned away from the baby, and the headache came back. “Patient lying down. Unable to care for baby. Not coping. Very upset.”

Four days and two painful blood patches later the headache resolved enough to allow me to stand up and let light and life back in. The anaesthetist sat on my bed and stroked my hair. Tears streamed down my face. He held my hand. I was so afraid of him; he reminded me of the pain. “Not coping.”

An angel of mercy comes along in the form of a health visitor

Slowly, but painfully, over the next day, the blood clot removed, the headache reappeared, and the light began to hurt behind my eyes. Over the next few days my back hurt where the blood patches had burnt their way in, and my left hand and arm were weak and constantly tingling. “From an anaesthetics point of view this patient can be discharged.”

From my point of view I was a wreck. Discharged with daily pain, curtains shut, little feeling in left arm and hand, feverish. Having nightmares about the anaesthetist. Painkillers don't touch the pain, so I visit my general practitioner for stronger stuff. Can't because I'm breastfeeding. I am unhappy, so let's try antidepressants. Can't because I'm breastfeeding. Perhaps the problem is psychological? Perhaps. “Patient not coping with life.”

The psychologist thinks that there is a deep anger towards the anaesthetist. Wants me to apportion blame. I do not feel anger. I do wonder, though, if the long term impact of dural puncture features in the medical curriculum, and sometimes late at night I wonder if the anaesthetist ever thinks about me or what became of me, but it isn't anger. We sort this out. Is it postnatal depression and post-traumatic stress presenting as neurological damage? Interesting theory. We even get into my childhood, but somehow the pain persists and the light is too bright and I have had enough. Psychotherapy is not helping the shortage of cerebrospinal fluid. “Not coping.”

Then an angel of mercy comes along in the form of a health visitor. She believes me, and she listens. She gets me to send for my notes, and we pick through them together. The hospital is worried. Why do we want my notes? I am invited for “an informal chat,” and five people appear. I am placed face down as an exhibit on a bed while they patronise above me. “Well, you are difficult, aren't you?” “Hello, I'm Dr X. I'm the only anaesthetist in this hospital that you haven't seen.” If I have seen them all why can't they come up with some answers? I feel humiliated and let down by the world. One of them sees my despair and takes some time to explain what he thinks is wrong. He is kinder and gentler than his colleagues and confirms that I had a “terrible experience.”

While much has been written about postsurgical pain, postanaesthetic pain seems largely ignored. Eventually a long term low grade cerebrospinal fluid leak is diagnosed. The hole has been a big one and my back is ripped to pieces from damage and mending. My health visitor is jubilant. I am relieved. It is not in my head, it is in my back. The pain is still there but less bitter when it has a name. Most dural puncture headaches resolve within a few days, but some don't. Mine didn't. The seven month threshold released me, but the tingling and numbness persist along with the relentless and annoying warm, tight sensation in my back that feels as though the blood patch is still being administered. The residuals I can cope with and have now learnt to live with. Bonding with the baby? No, it didn't happen. I was too sore to cope with that.

Flippancy, lack of interest, and arrogance may be common coping strategies among healthcare professionals faced with the non-coping patient. Not coping implies that coping is expected and is the sole responsibility of the patient. It is only now that I can look back and see how close I was to the edge that many others have slipped or jumped over. Good pain management begins with believing the patient and continues by providing an unthreatening forum in which to share the reality of the pain experience. These things, along with simple caring and explanation, were largely denied to me. I am, and will always remain, a different and damaged person because of it.