Desperate Request for Hospital Transfer After PCNSL Treatment
Hello everyone, I am in urgent need of assistance as I seek to facilitate my wife's transfer to a different hospital for a second opinion and a proper reevaluation of her condition. Here’s a summary of our situation: * My wife was treated for Primary Central Nervous System Lymphoma (PCNSL) by Dr. Christian Grommes at Memorial Sloan Kettering (MSK), and the treatment was deemed successful. * Her case is quite rare; she is a young, healthy individual who wasn't immunocompromised and had an atypical presentation that did not enhance on MRI scans. Ultimately, the diagnosis was confirmed through a brain biopsy, with symptoms beginning in October 2023. * In February 2025, she underwent autologous stem cell transplantation (ASCT). * Currently, there’s a possibility she is experiencing post-ASCT leukoencephalopathy. While not conclusively diagnosed, all indicators suggest this issue. She is sleeping excessively, sometimes over 20 hours a day, and has severe short-term memory loss, with occasional brief moments of clarity where she confuses her children's ages. * When she is awake, she can walk, though her movements are unsteady. Unfortunately, MSK has denied her inpatient rehabilitation based on her current state. * Several MRIs, spinal taps, and eye examinations indicate no signs of cancer recurrence. * MSK is preparing to send her home, leaving us with minimal hope. This cannot be the final chapter in her story. * I have a solid understanding of the statistics and potential outcomes associated with her situation. I am actively trying to secure a transfer to Dr. Alexandra Miller at NYU based on recommendations and insights from various contacts. I’m investigating every avenue available, but I fear my efforts might fall short. Despite my repeated attempts to advocate on her behalf, MSK has refused to initiate the hospital-to-hospital transfer and insists I manage this request myself. I have already contacted Dr. Miller’s office directly through their online portal and by phone. While they have noted my inquiry, I feel compelled to push harder to ensure Dr. Miller agrees to take on my wife's case. If anyone has suggestions or could assist in making a valuable connection, I would greatly appreciate any advice or help you could offer. Thank you sincerely for your time and support.
Answers (1)
6/21/2025, 5:50:37 PM
OpenHealth AI
It sounds like you are doing everything you can to ensure your wife receives the appropriate care after her treatment for Primary Central Nervous System Lymphoma (PCNSL). Given her current symptoms and the complexity of her case, pursuing a transfer is a vital step. Here are some main points, explanations, and actionable steps you can take:
Main Points:
- Seek a Transfer for a Second Opinion: You’re advocating for a second opinion at NYU, which is essential for differentiating between post-ASCT leukoencephalopathy and other potential issues.
- Focus on Documentation: Clear communication and comprehensive health records are critical in facilitating the transfer.
- Engage Support Networks: Utilizing support resources, both medical and personal, can help expedite the process.
Explanation:
Your wife's situation, particularly with her atypical symptoms and history, warrants further examination from another specialist. Given her ongoing symptoms—excessive sleep, short-term memory loss, and unsteady movements—it’s key to act swiftly but thoughtfully to ensure she receives the best possible care. It's understandable to feel frustrated with the current situation at MSK, but there are structured ways to push forward.
Prioritized Next Steps:
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Contact Dr. Miller's Office Again: Persist in communication with Dr. Miller’s office. When you reach out, clearly express the urgency of your wife's situation, providing them with a summary of her case and the reasons for the transfer. Ask if she could conduct a telehealth consultation as a preliminary step while the transfer is arranged.
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Request a Formal Referral from MSK: Even if MSK is reluctant, ask for a formal referral or transfer paperwork. Document every interaction you have, including dates, times, and the names of the individuals you spoke with. If they refuse, request a written statement outlining the reasons for their decision.
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Engage Patient Advocacy Services: Hospitals often have patient advocacy services or ombudspersons. Seek their help to facilitate communication with MSK and ensure your wife’s concerns are prioritized.
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Utilize Personal Networks: If you have contacts who can make personal introductions to Dr. Miller or her team, reach out for those connections. Sometimes, having a direct referral can expedite consideration.
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Consult Legal Counsel: If you continue to face resistance in transferring her care, consider speaking to a legal advocate who specializes in patient rights. They can provide advice on your rights regarding hospital transfers and care decisions.
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Explore Other Facilities: While focusing on NYU, consider researching other reputable hospitals that specialize in PCNSL treatment or neurological rehabilitation. Having backup options can keep pressure on the primary request and may yield quicker results.
Throughout this journey, it's crucial to maintain a focus on your wife's needs and be persistent in seeking the best care. You're doing an admirable job advocating for her, and I hope you find the support and solutions necessary for her recovery. Please let me know if you need further guidance or clarity on specific steps.
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