Navigating Persistent Pain After Aneurysm Coiling: A Personal Account
I am a 36-year-old woman, standing 5 feet 7 inches tall and weighing 145 pounds. My ethnic background is Caucasian. From the age of 14 until 33, I was a smoker, but I’ve since quit. I am also an alcoholic in recovery, having stopped drinking on September 4, 2021, after a decade of daily consumption. My medical history includes a diagnosis of a 3+ cm cerebral aneurysm located in the right posterior cerebral artery (PCA), which was successfully treated with coiling while I was 34 weeks pregnant in 2011. **Main Issue: I have been experiencing relentless pain on the right side of my head since the coiling procedure, which I underwent in 2011.** At present, my medications include Concerta, Prozac, and over-the-counter naproxen (Aleve). Additionally, I have been diagnosed with hypermobile Ehlers-Danlos syndrome (hEDS), dysautonomia, and ADHD. At the age of 22, during my pregnancy, I was informed about the presence of a significant (3+ cm) unruptured brain aneurysm. The coiling procedure, which required more than 7 meters of coils, was completed without complications. Though the aneurysm did not rupture and the procedure was ultimately life-saving for both me and my daughter, I have since been plagued by a deep, persistent pain localized to the right side of my brain. Despite numerous scans, the results consistently return as “normal.” Throughout the years, I have explored various treatment options, including medications, therapy, and consultations with numerous specialists, yet I have not found a satisfactory explanation for my condition. While I manage to get through each day, my ongoing pain and fatigue significantly diminish my quality of life. There are days when the discomfort intensifies, but I have been unable to identify any specific triggers or recurring patterns. Activities involving impact worsen my condition; running or jumping is simply not feasible due to the jarring sensations they create, and my baseline pain remains persistent with occasional spikes. Over the years, I have noticed no change in the intensity, frequency, or duration of my symptoms. At the end of this month, I will start Vyepti infusions in hopes of finding some relief. However, I am filled with apprehension that this, too, might lead to disappointment. My headaches have never seemed to be connected to migraine episodes. Nevertheless, I feel compelled to try any avenue for relief—if only to rule it out. I am reaching out to see if anyone has experienced similar challenges after a coiling procedure. Additionally, I am curious if there are any healthcare professionals here who are familiar with long-term neurological issues related to coil treatments that may not be visible in standard imaging. Your insights would be invaluable to me. Thank you for your help!
Answers (1)
7/9/2025, 11:01:52 PM
OpenHealth AI
I'm sorry to hear about the persistent pain you're experiencing after your coiling procedure. It sounds very challenging, especially considering your complex medical history. While it can be frustrating not to have clear answers, there are several understandable reasons for your symptoms, and there are steps you can take.
Key Points:
- Persistent head pain after a coiling procedure can stem from various causes, often related to nerve sensitivity or structural changes.
- Your combination of hypermobile Ehlers-Danlos syndrome (hEDS) and dysautonomia may contribute to headache patterns.
- The upcoming Vyepti infusions may provide relief, and it's worth monitoring their effect.
Explanation: After a coiling procedure, some individuals experience chronic headache due to nerve irritation, changes in cerebrospinal fluid (CSF) dynamics, or related to conditions like hEDS. The pain you're describing might not resemble typical migraines but could still be related to neurological or musculoskeletal factors. Chronic pain often has multiple contributing factors, including physical, emotional, and lifestyle aspects.
Next Steps:
- Track Your Symptoms: Keep a detailed diary of your pain intensity, location, triggers, and any additional symptoms. This can help identify patterns that may not be obvious.
- Focus on Pain Management Strategies:
- Continue with your current pain medication (naproxen) as needed and discuss with your doctor whether you should adjust or try additional treatments.
- Consider integrating non-pharmacological treatments such as physical therapy, cognitive-behavioral therapy (CBT) for pain management, or adaptive exercises that do not exacerbate your symptoms. Gentle stretching and relaxation techniques might be beneficial, especially with hEDS.
- Communicate with Your Healthcare Team: Share your symptom diary during your next appointment. Discuss the potential effects of Vyepti and any other treatments they might suggest that could align with your conditions.
- Explore Support Groups: Connecting with individuals who have experienced similar medical challenges, particularly following coiling procedures, may provide emotional support and practical advice.
Your determination to seek relief and your proactive approach to managing your health are commendable. Remember, you're taking important steps toward understanding and enhancing your quality of life. Please feel free to reach out if you want more specific information or support tailored to your concerns.
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