Struggling with VP Shunt Failure and Insufficient Medical Response
At 28 years old, I’m currently on medications including 15 mg of oxycodone, 50 mg of sumatriptan, along with Claritin, Zyrtec, and Benadryl. My medical background includes having undergone thirteen revisions of a ventricular-peritoneal (VP) shunt, two spinal surgeries, and multiple injuries including a severely damaged right leg and, less critically but still frustrating, a shattered kneecap and femur—wood floors have been quite painful. At this moment, my VP shunt is failing again, causing significant distress. My insurance company is insisting on a nuclear dye test, despite my two lumbar punctures showing elevated pressure levels. However, due to the history of my head injury resulting in the shunt, the imaging results appear normal. They previously mandated the nuclear dye test but then shifted to requesting an MRI instead. Complicating matters further, I am dealing with post-traumatic stress disorder (PTSD) from my injury and the approval for an MRI with general anesthesia is being withheld, which I need to manage the procedure without experiencing a panic attack. My surgeons’ office is diligently working to gain approval for either one of the necessary tests, but just last night I was struck by one of the most severe migraines I’ve ever encountered, compounded by the ongoing discomfort from the shunt malfunction. I can endure either the migraine or the shunt issues, but bearing both simultaneously is overwhelming. In a moment of frustration, I inquired to my insurance whether removing the shunt myself would compel them to take action, due to the excessive pain I'm enduring and their lack of willingness to assist. I don’t genuinely wish to harm myself or remove it involuntarily; however, the hospital remains unresponsive despite all signs pointing to overshunting, like slit-like ventricles without any evident papilledema. Previously, the only reason my surgeon was convinced of my symptoms is that I had an MRI taken before the shunt was implanted, which showed similarly narrow ventricles. He is aware that imaging can be deceptive, but when I visit the emergency room, the staff often tell me that everything appears functional and recommend following up with my surgeon on an outpatient basis. I am reaching a breaking point with this relentless pain and urgently need direction on how to alleviate it.
Answers (1)
7/25/2025, 11:50:44 PM
OpenHealth AI
I'm really sorry to hear about the difficult situation you’re going through. It sounds incredibly overwhelming to manage chronic pain, shunt failure, migraines, and the ongoing issues with your healthcare system. Let’s break this down to identify critical steps you can take to alleviate your current discomfort while advocating for more effective medical support.
Main Points:
- Addressing immediate pain and migraines.
- Communicating effectively with your healthcare providers.
- Managing PTSD symptoms during medical procedures.
Explanation:
The combination of a failing VP shunt, severe migraines, and the psychological stress of your situation can feel like too much to bear. It’s understandable to feel frustrated with medical responses, especially when you’re in significant pain. You’ve mentioned elevated pressure levels and symptoms of overshunting, which need to be addressed in your care plan.
Next Steps:
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Manage Immediate Symptoms:
- For Pain Relief: As you're taking oxycodone, ensure you are taking it as prescribed. Also, consider using ice packs on any areas of pain from the VP shunt or your injuries for short periods to see if that provides some relief. If your migraines continue, try to find a quiet, dark space to rest, and keep hydrated.
- Keep a Migraine Journal: Document frequency, duration, and severity of your migraines, as well as any potential triggers. This may help when discussing your care with healthcare providers later.
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Communicate with Your Healthcare Providers:
- Document Everything: Keep a record of all your symptoms, previous imaging, medications, and interactions with medical staff and insurance. This may help in making your case stronger when advocating for additional tests like an MRI with anesthesia or an urgent revision of your shunt.
- Express Urgency: When contacting your healthcare providers, communicate clearly about the severity of your current symptoms and the impact on your daily life. Mention that your migraines have worsened significantly to encourage a more immediate response.
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Addressing PTSD:
- Breathing Techniques: Consider practicing deep breathing or grounding exercises before medical procedures to manage anxiety. Tools like guided imagery apps can also be beneficial in coping with fear related to medical interventions.
- Professional Support: If you haven’t already, seek support from a therapist who specializes in PTSD or trauma-informed care. Telehealth options may be available that could make this more convenient while you’re managing chronic pain.
Please focus on these immediate steps while continuing to work with your surgical team to navigate the insurance challenges. Remember, you are not alone in this, and it’s okay to lean on supportive friends, family, or mental health resources during such a challenging time. Your wellbeing matters, and it's important to advocate for the care you need. If you have specific questions or updates, feel free to share!
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