Seeking Clarity Amidst Ongoing Health Issues
Age: 30 years | Weight: 100 lbs | Height: 5 ft Medical Background: Diagnosed with hypothyroidism, acquired cold urticaria, scoliosis, dermatographia, Henoch-Schönlein purpura, ADHD, and anxiety. Current Medications: Amber 5 mg Previous Medications: Cymbalta, Lyrica, Gabapentin, Nortriptyline. My Journey: In September 2023, I was hospitalized due to a kidney infection that resulted in two abscesses in my left kidney, which led to a pre-sepsis condition. Despite treatment, these abscesses persisted, causing recurrent infections that lasted until February 2024, when they finally resolved. During my birthday weekend, after consuming some drinks, I lost consciousness and was non-responsive. My body temperature dropped to dangerously low levels, requiring emergency blankets to stabilize me. After about 20 minutes, I regained consciousness. Initially, I thought I experienced a seizure, but the emergency room attributed my condition to alcohol consumption. In the following weeks, I began to suffer from severe pain throughout my body, waking up with my hands completely swollen, an enlarged abdomen, and swollen knees. My fatigue escalated, accompanied by migraines that left my mouth feeling numb. The situation has now deteriorated to include a burning sensation along my spine and abnormal feelings in my legs and feet, including burning sensations, pins and needles, spasms, and episodes of extreme coldness. Often, my legs numb and feel constricted, leaving me weak and barely able to walk. Lying down provides the most comfort, which has left me mostly bedridden. I have also lost my appetite, struggle with insomnia, and experience daily migraines. Additionally, I feel sharp pains in my knees whenever I move them. The tingling and numbness are now extending into my left hand. I have episodes where my heart rate spikes unexpectedly, leaving me breathless during routine tasks, such as loading laundry, which further exacerbates my elevated heart rate. Laboratory Tests Conducted: Complete Blood Count (CBC) indicates consistently elevated protein levels, the Antinuclear Antibody (ANA) test returned negative, and both the spinal and brain MRIs were unremarkable. An electromyography (EMG) scan revealed signs of distal nerve demyelination. I am reaching out for help as I endure relentless pain that feels like an unending cycle of suffering. Intriguingly, I've noticed some alleviation of nerve pain thanks to Ambien, which is currently my only source of relief.
Answers (1)
3/21/2025, 8:30:55 AM
OpenHealth AI
I'm truly sorry to hear about the challenging health issues you're facing. Your symptoms and experiences indicate that you are dealing with a complex mix of chronic conditions that can significantly impact your quality of life. Let's break down your concerns and outline some actionable steps you can consider to help address your symptoms.
Main Points:
- You are experiencing multiple chronic symptoms including severe pain, swelling, fatigue, and altered sensations.
- Given your history of kidney infections and possible nerve-related issues, it’s essential to monitor and manage your symptoms carefully.
Explanation:
Your description of persistent pain, altered sensations, and swelling suggests a possible exacerbation of your underlying conditions or the emergence of new symptoms following your recent health crisis. The findings of distal nerve demyelination might indicate nerve involvement, while your previous history of autoimmune conditions (like Henoch-Schönlein purpura) could complicate your current situation.
Given that you reported relief from nerve pain with Ambien (which is primarily used for insomnia), it may be worth noting potential interactions or the effects of your current medication regimen. The elevated protein levels could indicate an inflammatory process or another underlying issue.
Next Steps:
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Symptom Management:
- Pain Relief: Since you have noticed some help from Ambien, consider discussing with a healthcare provider about the potential of other pain management strategies, which might include non-steroidal anti-inflammatory drugs (NSAIDs) or neuropathic pain medications (like gabapentin or Lyrica), depending on your medical history and current health.
- Hydration and Nutrition: Focus on maintaining hydration and balanced nutrition, even if your appetite is low. Small, frequent meals may help; consider high-protein smoothies or soft foods that are easier to consume.
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Monitoring Symptoms:
- Keep a detailed symptom diary. Note the severity, triggers, and relief measures for your pain, and any changes in swelling or numbness. This can provide valuable information for your healthcare team.
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Physical Activity:
- If possible, gently engage in stretching or low-impact movements, like gentle yoga or seated exercises, to prevent stiffness. Always listen to your body and avoid activities that cause pain.
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Sleep Hygiene:
- Since insomnia is a concern, reinforce good sleep practices. Limit screen time before bed, maintain a regular sleep schedule, and create a comfortable sleep environment.
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Emotional Support:
- Given the emotional toll of chronic illness, consider seeking support networks, whether they be online forums, local support groups, or counseling. Connecting with others who understand your experience can provide relief and encouragement.
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Follow-up with Your Healthcare Provider:
- It's critical to have regular check-ins with your healthcare provider. Share your symptom diary and discuss your ongoing symptoms, especially the new onset of tingling and numbness. A rheumatologist or neurologist may provide additional insights considering your symptoms and history.
If there are any signs of new symptoms such as significant changes in vision, consciousness, or worsening of current symptoms, seek immediate medical attention.
These steps can guide your symptom management effectively while allowing space for medical evaluations and adjustments in your care plan. Hang in there, and remember that reaching out for help like you have is an important part of your journey.
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# 7-Month-Old Child with Abernethy Malformation - Exploring Treatment Options ## [7-Month-Old] Identified with Abernethy Malformation (Congenital Portosystemic Shunt) - Treatment Methods? **Age:** 7 months **Gender:** Female **Height:** Age-appropriate **Weight:** Currently 9 kg, was 2.8 kg at birth **Ethnicity:** Asian **Duration of Symptoms:** Present since birth **Location:** Uzbekistan **Pre-existing Health Issues:** Abernethy malformation (congenital portosystemic shunt), liver hemangiomas, chronic jaundice, anemia **Current Treatments:** Supportive management --- ## INITIAL PRESENTATION (June 2025 - July 2025) Our daughter arrived on **June 27, 2025**, presenting with: - Birth weight: **2.8 kg** - Marked jaundice (yellowing of skin and sclera) - Pale or clay-colored stools - **Bilirubin level: 245 μmol/L** (typically <20) An immediate ultrasound indicated multiple liver anomalies, initially thought to be hemangiomas. --- ## FIRST COMPREHENSIVE ASSESSMENT (August 1, 2025 - 1 Month Old) ### Multislice Computed Tomography (MSCT) with 3-Phase Contrast (August 1, 2025): **RESULTS:** - 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Urea: 1.80 mmol/L (normal) - Creatinine: 33.4 μmol/L (normal) - **ALT: >1000 IU/mL** (EXTREMELY HIGH - severe liver dysfunction) --- ## FOLLOW-UP IMAGING (December 16, 2025 - 5.5 Months Old) ### Liver Ultrasound: **RESULTS:** - Right lobe: 64 mm, left lobe: 43 mm - Liver capsule appears irregular and vague - **Parenchyma: heterogeneous, showing 7 hypo-isoechoic nodules** (sizes range from 11.5×10.7 mm to 17.6×15.4 mm) - Capsule features uneven contours - Blood flow noted during Doppler examination - No dilation in intrahepatic bile ducts - **Portal vein: 3.9 mm** (decreased from 6.1 mm - indicating improvement) - Common bile duct: 1.4 mm - Gallbladder: measures 43.7×9.2 mm (pear-shaped, wall thickness 2.0 mm, homogeneous, free of stones) **ULTRASOUND ASSESSMENT:** "Presence of liver volumetric formations (specifically liver hemangiomas)." --- ## LATEST MSCT (February 6, 2026 - 7 Months Old) ### MSCT with 3-Phase Contrast: **FINDINGS:** - Liver remains normal in size, but shows heterogeneous structure with uneven contrast enhancement - 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WBC: 5.8 × 10⁹/L (SHOWS IMPROVEMENT) - **RBC: 2.93 × 10¹²/L** (IMPROVED but still low) - **Hemoglobin: 72 g/L** (SHOWS IMPROVEMENT but still low) - Platelets: 223 × 10⁹/L (BACK TO NORMAL) - Neutrophils: 30.0% - Lymphocytes: 64.8% - Monocytes: 4.6% ### Biochemistry (January 28, 2026): - Total protein level: 67 g/L (slightly deficient) - Creatinine: 20.7 μmol/L - **Total Bilirubin: 242 μmol/L** (STILL HIGH - unchanged) - **Direct Bilirubin: 142 μmol/L** (VERY HIGH) - **ALT: 50 IU/mL** (DRASTICALLY LOWER from >1000!) --- ## OVERVIEW OF PROGRESS OVER 6 MONTHS | Parameter | August 2025 | January 2026 | Change | |------------------|-------------|---------------|--------------------------| | **Hemoglobin** | 69 g/L | 72 g/L | ↗ Slight improvement | | **RBC** | 2.1 | 2.93 | ↗ Improved | | **ALT** | >1000 | 50 | ✓✓ MAJOR IMPROVEMENT | | **Bilirubin** | 245 | 242 | → Unchanged (still elevated) | | **Portal vein** | 6.1 mm | 3.9 mm (US) | ↗ Decreased | | **Platelets** | 403 | 223 | ↘ Normalized | | **Shunt size** | 9.9 mm | 9.9 mm | → No Change | --- ## CURRENT SITUATION (February 2026 - 7 Months Old) - **Weight:** 9 kg (good growth rate in spite of condition) - **Jaundice:** Continues to be present (yellow skin) - **Stools:** Remain pale/clay-colored - **Development:** Achieving appropriate milestones - **Energy:** Appears to have a good energy level - **Feeding:** Normal appetite --- ## QUESTIONS FOR r/AskDocs We have been informed this is **Type 2 Abernethy malformation** (portal vein present). **Three treatment avenues have been proposed:** ### Option 1: **Endovascular Coil Embolization** (minimally invasive approach) - A catheter is inserted via the leg vein to access the shunt and deploy coils/plugs to close the abnormal vessels - Pros: No surgical incision, minimal discomfort, short hospital stay (2-4 days), no scars, enhanced safety - Duration: 1-2 hours - Recovery: 2-4 weeks for jaundice to show improvement ### Option 2: **Open Surgical Intervention** - An incision in the abdomen to ligate abnormal vessels and redirect blood to the liver - Pros: Direct visualization, effective results - Cons: Surgical scar, longer recovery time (7-14 days in hospital) - Duration: 2-4 hours ### Option 3: **Liver Transplantation** - We have been advised this is not necessary as the portal vein is functional and liver health is improving. --- ## SPECIFIC QUESTIONS TO CONSIDER: 1. **With a functional portal vein (6.1 mm) and improving liver function (ALT normalized), is it advisable to pursue endovascular closure as the preferred treatment?** 2. **Despite ALT levels improving, the bilirubin remains consistently high (242). Should this be a cause for concern? Is there a prospect for it to normalize post shunt closure?** 3. **Are the hemangiomas/nodules (11.6×20.7 mm) linked to the shunt? Will they likely resolve following shunt repair?** 4. **How urgent is the proposed intervention? Is immediate action required, or is there flexibility to wait a few months?** 5. **What complications should we be vigilant for during the waiting period?** 6. **Regarding endovascular closure - what is the average success rate for infants aged 7 months? Are there concerns regarding the shunt size (9.9 mm)?** 7. **The measurement of the portal vein has shown improvement from 6.1 mm to 3.9 mm; should this be perceived as a positive sign or a reason for concern?** 8. **Are there special directives (diet modifications, medications) we should consider while awaiting the procedure?** 9. **Post-procedure, how long should we expect it might take for:** - Normalization of bilirubin levels? - Return of stool color to normal? - Resolution of jaundice? - Regression of hemangiomas? 10. **Can you recommend any specialized centers for pediatric Abernethy malformation treatments? We are located in Uzbekistan but are prepared to travel (to Turkey, Russia, South Korea, etc.)** --- ## ADDITIONAL INFORMATION - No family history of hepatic diseases - Pregnancy and delivery were normal - No additional congenital defects identified - Immunizations up to date - No history of bleeding disorders - No signs indicative of encephalopathy - Child is alert and engaged --- **I can supply actual MSCT images and comprehensive lab reports if they would be of assistance.** We sincerely appreciate any insights you can provide. We are striving to make the most informed decision regarding our daughter’s care and highly value expert medical opinions. **TL;DR:** 7-month-old diagnosed with Abernethy Type 2 malformation (9.9 mm portocaval shunt, patent portal vein). Liver functionality is improving (normalized ALT) while bilirubin remains elevated (242). Evaluating options between endovascular coil embolization and open surgery. Seeking expert advice on optimal treatment strategy and timing.