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:
-
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.
-
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.
-
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.
-
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.
-
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.
-
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.
Related Questions
Should You Worry About Blood-Tinged Mucus in Your Stool?
27-year-old male, measuring 6 feet and weighing 220 pounds. This morning, I experienced a bowel movement and noticed what seemed to be blood mixed with mucus on my stool. The color was neither vivid red nor deep dark, but it definitely raised some concerns for me as this is an unusual occurrence for me. Just two months ago, I underwent a colonoscopy which showed no significant issues, with the exception of some internal hemorrhoids. Last night, I also experienced a sudden bout of abdominal cramps followed by diarrhea, which might be relevant to this situation. Any insights or suggestions would be greatly appreciated.
Understanding Abnormal EBV Blood Test Results
I’m a 42-year-old woman, standing at 5'2" and weighing 140 pounds. I’ve been diagnosed with generalized anxiety disorder (GAD), major depressive disorder (MDD)—though I have my doubts about that—and panic disorder. Currently, I am on Pristiq at a dosage of 100mg. My journey with antidepressants began roughly five years ago. Other than a minor Vitamin D deficiency, all my recent blood tests have returned normal results. However, I’ve consistently faced persistent fatigue since starting the medication. Over the past couple of years, various health professionals have described my blood work as nearly flawless. Despite this, I underwent another test recently due to my ongoing exhaustion and lack of motivation, which revealed some concerning EBV levels. The test results showed: - EBV Early Antigen Antibodies, IgG: 21.6 U/mL - EBV Antibodies VCA, IgG: 181 U/mL According to the reference ranges provided by Labcorp, these figures are significantly elevated. Naturally, I turned to the internet to seek answers, which has left me feeling quite anxious about dire possibilities such as cancer or severe chronic Epstein-Barr virus (EBV) issues. While I’ve read various articles on this subject, I’m not a medical professional. Should I be deeply concerned? Is this kind of elevated reading typical for someone who has contracted the virus and carries it throughout their life? Any advice or insights would be greatly appreciated.
Strategies for Managing Seizures
Age 30, experiencing Psychogenic Non-Epileptic Seizures (PNES), along with challenges including major depressive disorder, generalized anxiety disorder, insomnia, complex post-traumatic stress disorder (c-PTSD), and borderline personality disorder. Current medications include Cymbalta at 90 mg, Abilify at 5 mg, Klonopin at 0.5 mg taken twice daily, and Seroquel at 100 mg. Although I recently enjoyed a few days without seizures, they have returned more intensely than before. I've noticed my blood pressure dipping slightly, causing me to feel unwell throughout the day. There are moments when I feel faint, and I’m seeking advice on how to alleviate the simultaneous issues of chest discomfort and seizures. What steps can I take to manage these symptoms effectively?
A Mysterious Multisystem Illness Affecting Three Family Members: A Six-Year Quest for Answers
Greetings, I am reaching out to this community in search of insights, questions we might have overlooked, or guidance toward a potential solution. Our medical journey has stumped numerous healthcare professionals. Let me introduce our family: I’m a 57-year-old woman with two sons aged 25 and 33. We are of Caucasian descent and hail from Europe. Our family does not partake in smoking, alcohol, or recreational drug use. Here are our physical details: - My height and weight: 162 cm / 60 kg - Older son: 185 cm / 77 kg - Younger son: 180 cm / 64 kg Until 2019, we enjoyed robust health and an active lifestyle. However, within a brief span of five months six years ago, all three of us suddenly developed a perplexing multisystem illness with symptoms progressively worsening and new ones emerging. There was no identifiable catalyst—no infections, vaccinations, toxic exposures, or travel events that preceded the onset of our symptoms. Current Shared Symptoms Among Us: - Severe food intolerances affecting almost all foods and medications - Gastrointestinal issues: includes belching, constipation, bloating, rumbling intestines, and acid reflux - Neurological symptoms: debilitating headaches, severe eye strain (even without the use of screens), muscle twitching - Cardiovascular/autonomic issues: heart palpitations, signs consistent with POTS - Dermatological problems, joint discomfort, and persistent fatigue What We Have Dismissed: We have thoroughly tested for numerous conditions using PCR, serologies, imaging, and functional assessments, all yielding negative or normal outcomes: - Infectious agents: ruled out H. pylori, Lyme disease, EBV, CMV, HSV, HHV-6, Parvovirus B19, enterovirus, Mycoplasma, Chlamydia, tuberculosis, as well as various bacteria, viruses, and parasites - Gastrointestinal diseases: excluded IBD, eosinophilic esophagitis/gastroenteritis, celiac disease, Whipple’s disease - Endoscopic procedures revealed inflamed gastric lining, attributed to bile reflux, yet doctors have not traced the source of this abnormal reflux. - Autoimmune and allergic disorders: tests related to ANA, ANCA, MCAS, and others all returned negative or normal - Toxic exposure: tests for mold/mycotoxins, heavy metals, and environmental toxins came back negative - Metabolic/genetic disorders: eliminated possibilities such as Wilson’s disease, porphyria, hemochromatosis, and various inborn metabolic errors - Nutritional evaluations, along with treatments involving PPIs, antibiotics, probiotics, anti-parasitics, restrictive diets, and antihistamines, failed to yield improvements. Peculiar Test Findings: Despite the lack of conclusive results, we have noted several persistent abnormalities: - Immunological & Inflammatory markers: - Heightened levels of eosinophilic cationic protein (ECP) despite normal levels of eosinophils, tryptase, and histamine - Increased oxidized glutathione, while reduced glutathione remains normal - Elevated TNF-alpha, neopterin, and TGF-beta1 levels - Mild immune dysregulation (without fulfilling autoimmune disease criteria) - Specific findings for each family member: - Younger son (25): elevated IgG4 and fluctuating ALT (up to 100 u/L) - Older son (33): heightened total bilirubin (39 μmol/L) and direct bilirubin (10 μmol/L), along with increased total IgM and slightly elevated IgG4 - Myself: mildly raised amylase (120 u/L) and elevated total IgM We find ourselves at a standstill. We desperately hope to connect with anyone who may have faced a similar situation involving multiple family members and multisystemic symptoms, or who might recognize an uncommon pattern. We would greatly appreciate any thoughts, questions, or even unconventional ideas. Thank you for your time.
Dark Growth on Thumb Accompanied by Redness
I'm a 28-year-old male weighing 210 pounds. Approximately ten days ago, I noticed a red patch forming on my thumb. Initially, it presented as merely a reddish area before gradually developing into a bump after a few days. At first, the bump was relatively light in hue, but as time passed, it began to fill with a substance and took on a yellowish tint. Now, it has darkened significantly, nearing a black appearance. While the size of the red area and the bump has remained consistent, with no signs of expansion, the color continues to evolve. There is no discomfort when the red area is untouched, yet any accidental contact with the bump can provoke some pain.