Audrey shares the story of her spinal CSF leak from a labor epidural gone wrong.
Can you imagine coming home to your husband and five-year-old son with your newborn son AND a severe headache when upright? Imagine trying to take care of your family when being upright results in excruciating head pain, nausea, and other symptoms. This is Audrey’s story of her spinal CSF leak from a labor epidural gone wrong.
Her obstetrician recognized that her headache and nausea was the result of a dural puncture from the epidural catheter placement for labor anesthesia. When an epidural catheter is placed for anesthesia, normally the dura is not punctured, however, a puncture or a tear of the dura may occur inadvertently. This is one type of iatrogenic spinal CSF leak, one that occurs as the result of a medical procedure.
The usual treatment for such a “post dural puncture headache” is an epidural blood patch. This procedure involves the injection of the patient’s own blood into the space just outside the dura, called the epidural space. This is often, but not always curative. Occasionally, more than one epidural blood patch is needed. Audrey did not get relief from her first blood patch.
Two months later, still suffering, she went to the emergency department, where she was given pain medication and told that she had a migraine. She was referred to a pain management physician who performed two more blood patches, but neither procedure offered any relief. She was told that he could do nothing more to help her.
More time passed as she struggled to care for her children. Being upright meant severe headache, nausea, vomiting, pain between her shoulder blades and other symptoms. It was horrible. With her husband deployed intermittently with the air force, her father came to stay with her to help out. She eventually had two more blood patches that did help her pain, but only temporarily. The symptoms returned.
Six months had passed. Brain and spine imaging was all reported as normal. It wasn’t easy to get help. It seemed that the severity of her pain was being underestimated. Lack of familiarity with the headache from a spinal CSF leak made it more difficult. Lack of familiarity that a labor epidural can cause a spinal CSF leak made it more difficult. She saw a counselor for support since she was not getting anywhere with medical appts. A patient advocate suggested that she was seeking attention because her husband was deployed in Afghanistan!
Three neurosurgeons that Audrey consulted had nothing to offer: the first one indicated that he had nothing to offer; the second neurosurgeon told her that her headache was from neck problems; the third neurosurgeon told her that because she didn’t have fluid dripping out of her nose, she did not have a CSF leak. (CSF leaks in the head are not similar to spinal CSF leaks)
Ten months had passed. Audrey was discouraged. She searched online and found information and support online where she was given the name of a neurosurgeon that could probably help her. Within a month, she had surgery to find and repair a dural tear from the labor epidural.
Unfortunately, her symptoms continued. Because the nurse anesthesiologist who did her procedure had tried over 10 times to place the epidural catheter, it was suspected that there was likely a second CSF leak present. Over the next 18 months, Audrey had 6 more epidural blood patches. Each one offered relief, but each time, her symptoms eventually returned.
A second surgery was done. A second dural tear was found and repaired.
Since then, Audrey’s low CSF pressure symptoms resolved. She developed symptoms of high CSF pressure, called rebound intracranial hypertension that can occur after successful treatment of a spinal CSF leak. This is usually self-limited as the body finds a new equilibrium.
“It will soon be a year since my second surgery and my youngest turned 3 a few months ago. I am doing well now; even though I still have some symptoms from rebound high pressure, I am able to be functional upright and be a mother, wife and singer. Our family endured a lot from that labor epidural gone wrong.”
“While I am happy to be feeling better, there are things that I should not do for fear of risking a relapse. I will never ride a roller coaster with my kids. The sky-diving wedding vow renewal that my husband and I had planned won’t happen now. I will not be able to pursue a career in Personal Training and my options to practice and teach Kung-Fu and Yoga are gone as well. The life long physical restrictions have been very hard to accept.”
For Audrey, the dural tears that resulted from her epidural anesthesia for labor left her suffering with a severe positional headache for two and a half years. She did get temporary benefit from epidural blood patches, but ended up requiring two surgeries to repair two dural tears.
Lack of awareness amongst medical professionals did contribute to her suffering. Not every dural puncture or defect from a labor epidural will resolve with one or two blood patches. Sadly, her suffering was often trivialized and dismissed.
Our team at Spinal CSF Leak Foundation wishes to extend our appreciation to all those physicians working so hard to help patients, as well as those who assisted with this feature story.