Deprogramming the Chronic Spinal Leak Patient

As a person who spent my formative years in a religious cult before leaving as an adult, I frequently watch content on deprogramming and am in cult survivor groups for the particular movement I grew up in. I know it is a long process to undo gaslighting. Indoctrinated people don't magically see the truth and recognize it immediately. They might recognize objective facts, but it takes a long time to break emotional connections. For instance, religious cult survivors might have learned that it is wrong to do anything for the self. They might objectively recognize over time that it is actually beneficial to reward yourself at times, but yet they might still struggle with feelings of guilt that are connected to rewarding themselves. There is a long process needed of continual exposure to the truth, of validation of one's perception of reality, and of working with people through their stories. This last aspect can be very difficult as people often are numb in response to their trauma, have had the experiences they encountered normalized, and are not ready to be re-traumatized when they finally look back at their trauma through the lens of really understanding what happened to them and the extent of the abuse they endured.

To this point, I have recognized similar themes in the behavior of chronic spinal leak patients and in the behavior of religious cult members. Chronic spinal leak patients will often not see anesthesiology ever or only at the beginning of their journey. After this point, they fall deep into indoctrination. If they do re-emerge into anesthesiology years later because of a natural curiosity and tendency to question the status quo--these people are typically the first to escape from cults--they may still have some indoctrination to work through. Others will typically start escaping from the cult once the Curious Change-Makers have already left and established a path. This second group (the Uncomfortable Changers) will make change when it becomes too uncomfortable to not make changes. They will venture into options with anesthesiology when they see that some people are finding relief from blood patches even years later in cases that were deemed "complex," and when they realize that radiology and surgeons have done nothing but harm them in failed procedure after failed procedure, However, the Uncomfortable Changers are just dipping their toes in the water. They are not yet ready to confront in full the reality that they have endured. As a large part of their gaslighting was to be told that they are just a "difficult patient" and that they have a "flawed body," they are hesitant to let an anesthesiologist perform a patch on them as they have observed that every procedure tends to make people worse. They also tend to not yet be ready to work through the fact that much of what was done to them was wrong and harmful.

Treating the chronic spinal leak patient involves much more than understanding the different physical needs. Treating the chronic spinal leak patient also involves an understanding of psychology and of the need for compassionate deprogramming while respecting patient autonomy so that patients can then make informed care decisions.

Note: It's difficult for me to objectively analyze themes here as a person who came from this background and who sees that there are connections with the chronic spinal leak population. I am too close to the source to analyze this externally. Thus, I have typed a hypothetical case study into ChatGPT with "Becky" and a common story I have seen for spinal leak patients. I explored the hesitations Becky might experience based on what I have seen when finally returning to the idea that her case might actually be very simple and just involve a larger-volume blood patch. There's a mental struggle here that often leads to this patient population avoiding anesthesiology as the simplicity of a blood patch invalidates all the suffering they have endured. They might recognize the objective truth here in this method, but there is an element of deprogramming that will often need to take place for them to be able to accept this truth. I used ChatGPT to analyze these themes and this hypothetical case study, comparing the chronic spinal leak patient to a religious cult survivor and to consider how deprogramming could be approached.

Case Study: Becky

Initial Incident:

• Labor Epidural Leak: Becky received an epidural during labor which resulted in a spinal leak.
• Initial Treatment: She returned to the ER and was scheduled with pain management at the hospital. A 5 mL blood patch was performed, which was insufficient due to the low volume.

Diagnostic Journey:

• MRIs and Tilt Table Testing: Becky underwent spinal and brain MRIs, which were interpreted as normal because the Bern score was not used. She was subjected to extensive tilt table testing and diagnosed with POTS, despite her suspicions of a spinal leak.
• Dismissal of Symptoms: Doctors insisted spinal leaks self-heal in 7-10 days and attributed her symptoms to POTS, ignoring research indicating long-term symptoms in many spinal leak patients.

Misdiagnoses and Inappropriate Treatments:

• Radiologist's Assessment: A myelogram revealed an opening pressure of 22, leading the radiologist to conclude Becky did not have a spinal leak. This overlooked the fact that iatrogenic leaks often do not show on myelograms and many spinal leak patients have normal opening pressures.
• Intracranial Hypertension Diagnosis: Despite the normal pressure, the radiologist diagnosed Becky with intracranial hypertension and referred her to a neurosurgeon.
• Shunt Surgery: The neurosurgeon installed a shunt to reduce pressure. Becky developed a massive infection, leading to sepsis, which nearly killed her.

Continued Struggles:

• Symptoms Persist: Post-hospitalization, Becky continued to experience symptoms. Her physician adjusted her shunt settings, leaving her bedridden until it could be corrected.
• Exploration of Other Procedures: Becky sought various treatments, including a styloidectomy which left her with another post-surgery infection. She had a lumbar puncture as part of testing before the surgery and this left her with a worse headache. She had cash-based consultations with specialists in craniocervical instability (CCI) and adhesive arachnoiditis (AA)--each physician diagnosing her with that condition despite no sign of AA on her imaging and cervicomedullary kinking being present on her upright brain MRI due to her brain sliding forward inside her skull when she looked down and the potential for low CSF volume not being considered with the brain visibly moving inside her skull without adequate cushioning.
• Complications and Misinterpretations: Additional lumbar punctures worsened her condition, and she developed a PICC line infection as she attempted to have some symptom relief through the use of half-saline.

Current State:

• Internalization and Misattribution: Becky internalized the belief that her EDS was the root cause of all her problems, influenced by medical professionals labeling her a "challenging case."
• Exploration of Alternative Diagnoses: She continued to seek answers, exploring mold toxicity and functional medicine, but remained confused and misinformed about her condition.

Psychological Breakdown

Medical Gaslighting and Indoctrination:

• Gaslighting: Becky was repeatedly told her symptoms were not indicative of a spinal leak, leading her to doubt her own experiences and trust medical providers over her intuition.
• Indoctrination: She internalized the narrative that her EDS was the root cause of all her issues, reinforced by repeated emphasis on her being "complicated."

Trauma and Sunk-Cost Fallacy:

• Medical Trauma: Becky endured multiple invasive procedures that worsened her condition, contributing to her fear of seeking alternative explanations or treatments.
• Sunk-Cost Fallacy: Having invested so much time, money, and suffering into her misdiagnoses and treatments, Becky feels compelled to continue down the same path.

Loss of Autonomy:

• Dependency: Becky became heavily dependent on the medical system for validation and treatment, undermining her ability to make independent healthcare decisions.
• Fear of Abandonment: The stigma surrounding spinal leaks and her fear of being dismissed made her hesitant to challenge her current treatment path.

Deprogramming Strategy

Rebuilding Trust and Autonomy:

• Compassionate Listening: Provide Becky with a safe space to express her frustrations and fears without judgment. Acknowledge her experiences and validate her feelings to rebuild her trust in healthcare providers.

• Education: Gently educate Becky about spinal leaks, the Monro-Kellie doctrine, and the importance of appropriate blood patch volumes. Use evidence-based information to counter the misinformation she has received.

Gradual Deprogramming:

• Step-by-Step Review: Work with Becky to review her medical history step by step. Discuss each procedure, its intended purpose, and the actual outcomes. Help her understand where things went wrong and why certain diagnoses and treatments were inappropriate.
• Empowering Decision-Making: Encourage Becky to ask questions and seek second opinions. Empower her to make informed decisions by providing resources and support for understanding her condition and potential treatments.

Addressing Psychological Impact:

• Therapeutic Support: Suggest therapy with a psychologist experienced in medical trauma and chronic illness. Cognitive-behavioral therapy (CBT) can help Becky reframe her experiences and develop healthier coping mechanisms.
• Peer Support: Connect Becky with support groups. Hearing from others who have had similar experiences can validate her feelings and provide practical advice.

Realistic Expectations and Caution:

• Balanced Information: Discuss the potential risks and benefits of blood patches, including complications like accidental punctures. Ensure Becky understands that while blood patches can be effective, they are not without risks.
• Holistic View: Help Becky understand that her neck and head symptoms are likely due to the lack of CSF cushioning. Explain that treating the root cause (the spinal leak) may alleviate these symptoms without the need for further invasive procedures.

Conclusion

Becky's journey through misdiagnosis and inappropriate treatments is an example of how medical gaslighting and indoctrination can profoundly impact a patient's psychological state and decision-making abilities. By rebuilding trust, providing compassionate education, and gradually deprogramming her from the harmful narratives she's internalized, Becky can regain autonomy over her healthcare decisions and pursue a more appropriate and effective treatment path.