OpenHealth Q&A

Struggling with Adhesive Arachnoiditis: A 34-Year-Old's Battle for Pain Relief and Medical Support

**Personal Information** - **Age:** 34 - **Gender:** Female - **Height:** 5 feet 5 inches - **Weight:** 160 pounds - **Smoking Status:** Non-smoker - **Alcohol Consumption:** None reported - **Location:** Northern Virginia, USA **Chief Complaint** The individual is suffering from debilitating neuropathic pain stemming from adhesive arachnoiditis, which developed following a spinal surgical procedure. Over the past month, there have been multiple emergency room visits due to severe and unmanageable pain episodes. **Duration of Symptoms** The diagnosis of arachnoiditis was made after a tethered cord release surgery conducted in November. Symptoms have significantly intensified in recent months, with a marked increase in the last four weeks. **Medical History Highlights** - Diagnosed with Ehlers-Danlos Syndrome - Suffers from Postural Orthostatic Tachycardia Syndrome (POTS) - Has a rare variant of cystic fibrosis that is well-managed with the medication Trikafta - Has a history of Chiari malformation, which has been surgically treated - Underwent two tethered cord release surgeries - Had a laminectomy performed - Experienced a double-level spinal fusion - Recently diagnosed with adhesive arachnoiditis following surgery **Current Medications** - **Percocet:** 15 mg, administered five times a day for pain control - **Trikafta** for cystic fibrosis - Anti-nausea medication as needed Recently, a trial of an intrathecal pain pump using morphine showed promising results, and she is anticipating the permanent pump installation shortly. **Present Condition** In the last month, there have been four emergency room visits due to uncontrolled pain episodes. During these flare-ups, she rates her pain at a staggering 12 out of 10, describing it as severe burning neuropathic pain that originates in the lower spine and radiates down into the legs. Her baseline blood pressure is relatively low (approximately 95/65), which makes it difficult for ER staff to manage her pain effectively. Doctors often display reluctance to increase her IV opioid dosage because of the associated risk of hypotension. Typical pain management measures during ER visits have included: - Initial dose of 0.5 mg of IV Dilaudid - Followed by 1 mg after one hour, and another 1 mg an hour later - Eventually increasing to 2 mg as needed Following adequate medication, her pain reduces to about 7 out of 10, which provides her with some relief. Nevertheless, each visit to the ER tends to be lengthy and challenging before achieving satisfactory pain relief. There is an increasing worry regarding the swift progression of her pain and whether she can endure this suffering while awaiting her scheduled pain pump operation. **Challenges in Accessing Care** - Unfortunately, both INOVA and Johns Hopkins neurology departments have declined to accept her case due to its complexity. - An appointment at UVA is set for April. - Her surgeon who performed the tethered cord operation is based at Brown University in Rhode Island and has specialization in conditions related to EDS. **Inquiries** 1. How can emergency room pain management be enhanced during acute pain episodes? Would providing a written management protocol from her pain management specialist alleviate some issues? What strategies can be employed at ERs to streamline the process of obtaining timely pain relief? 2. Which specialists or clinics are best suited for the ongoing management of adhesive arachnoiditis? Are academic neurology departments, neurosurgeons, or multidisciplinary pain clinics the most suitable options? What is the typical pathway for complex spinal patients seeking advanced care? Much of her anxiety is tied to the uncertainty surrounding her condition and future treatment options. Any advice on these matters would be immensely valuable.

Answers (1)

2/14/2026, 6:10:53 PM

OpenHealth AI

Summary

Managing adhesive arachnoiditis and the associated severe pain is an ongoing challenge, especially during emergency visits. There are strategies to enhance pain management and approaches to identify specialized care that may better meet your needs.

Explanation

Adhesive arachnoiditis is a complex condition that can lead to debilitating pain, particularly when associated with a history of spinal surgeries. It’s understandable to feel anxious about the severity and management of your symptoms, especially given the chronic nature of your pain and the struggles with ER care.

Your pain management protocol in the ER has been challenging, especially with the limitations posed by your blood pressure levels. Documenting a comprehensive pain management plan from your pain specialist could absolutely help the ER staff understand your specific needs and preferences. Furthermore, identifying the right specialists may significantly improve your ongoing care.

Next Steps

1. Enhancing Emergency Room Pain Management:

   • Develop a Written Pain Management Protocol: Work with your pain management specialist to create a clear and concise protocol that outlines your pain management history, preferred medications, and effective dosages during acute episodes.
   • Communicate with ER Staff: Whenever possible, involve your pain management specialist in communicating with ER staff directly. This can provide clarity regarding your needs and may expedite treatment.
   • Pain Scale Documentation: When presenting to the ER, clearly articulate your pain level using the scale (1-10) and describe your typical pain management routine. Bring along any relevant medical documentation and your written protocol.

2. Finding the Right Specialists for Ongoing Management:

   • Consider Multidisciplinary Pain Clinics: These clinics specialize in managing chronic pain syndromes and may offer a collaborative approach involving neurologists, pain specialists, and physical therapists. Look for those experienced in conditions like arachnoiditis and Ehlers-Danlos Syndrome (EDS).
   • Academic Medical Centers: Facilities such as academic neurology departments often have the expertise required for complex cases. If Johns Hopkins and INOVA are unavailable, explore other academic institutions with robust neurology and pain management programs.
   • Neurosurgeons Specializing in EDS: A neurosurgeon familiar with EDS and surgical complications might offer targeted interventions or therapeutic options. This could include revision surgeries or advanced pain management techniques.

3. Support and Self-Care:

   • Stay Connected: Engage with patient support networks for individuals with similar conditions. Sharing experiences can provide emotional support and practical coping strategies.
   • Mindfulness and Relaxation Techniques: Explore practices that may help alleviate anxiety and improve pain tolerance, such as mindfulness, yoga, or guided imagery.

In summary, while managing adhesive arachnoiditis can feel overwhelming, especially during acute pain episodes, advocating for your needs through a structured pain management plan and seeking specialized care can lead to better outcomes. Stay hopeful as you prepare for the installation of the pain pump, and prioritize strategies to support your pain management in the interim.