Struggling with Vascular Health: A Call for Help
Situation Overview: I am a 31-year-old woman, a survivor of two deep vein thrombosis (DVT) incidents, which first required intensive care when I was just 18 years old. Diagnosed with protein S deficiency and an MTHFR mutation, I am currently prescribed Xarelto 20mg indefinitely. I want to clarify that I am confident I am not experiencing a new clot, as I have no symptoms such as warmth or discoloration. My intuition tells me I might be dealing with post-thrombotic syndrome (PTS), chronic venous insufficiency (CVI), chronic inflammation, or lymphedema. However, I lack a definitive diagnosis because medical professionals seem to overlook my concerns. After waiting six months to see a specialist in veins, I left the appointment feeling insignificant; the doctor barely acknowledged my pain because there were no visible signs of distress. Despite being energetic, maintaining a healthy diet, and exercising regularly, my pleas for help were met with indifference. I am exhausted by the repeated advice to simply elevate my legs and wear compression garments. I already practice that faithfully! I engage in manual lymphatic drainage, my husband helps relieve the tension in my legs, I take intermittent walks, and I try various wellness techniques like dry brushing. I’m pleading for a solution to ease my discomfort, which has led to panic attacks fueled by my fear of developing another clot. My symptoms consist of persistent swelling and inflammation, particularly around my knees and between my ankles and calves, where my skin feels hard to the touch. I experience extensive bruising across my legs, intense pain radiating from my feet to my calves, episodes of low blood pressure and dizziness, brain fog, and chronic fatigue. It's unclear whether the fatigue and mental fog are connected. Sometimes my body demands I rest and elevate my feet, yet I know I should maintain my activity level, creating a vicious cycle. I used to enjoy hiking, but the pain has made it impossible. The thought of enduring this ongoing struggle has me willing to sacrifice my savings for some relief and a return to normalcy. Unfortunately, the compression and elevation methods provide only minimal, temporary comfort. Are there any supplements I can safely take alongside Xarelto? Do I really have to endure another long month until my next appointment with a vein specialist? I'm terrified that I will encounter yet another professional who disregards my experiences. I feel lost and desperately need guidance.
Answers (1)
9/4/2025, 11:30:57 PM
OpenHealth AI
I understand you're feeling overwhelmed by your persistent symptoms and the challenges in getting the support you need. Your history of deep vein thrombosis, protein S deficiency, and MTHFR mutation, along with the ongoing discomfort you're experiencing, certainly warrant proper attention and understanding. You're already taking proactive measures, which shows your commitment to managing your health. Let's focus on providing clarity on your situation and next steps to help you feel more empowered in managing your vascular health.
Explanation of Your Situation
Post-thrombotic syndrome (PTS) and chronic venous insufficiency (CVI) are conditions that can occur after DVT, leading to swelling, discomfort, and other symptoms like the ones you describe. Your symptoms of persistent swelling, tingling, and fatigue can be distressing, and it's important to acknowledge how these affect your quality of life. It's understandable to feel anxious about potential complications, especially with your medical history.
Prioritized Next Steps
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Track Your Symptoms in Detail:
- Keep a detailed journal of your symptoms, noting what you experience daily, when, and any triggers. This can help you identify patterns and provide valuable information for your next appointment with a healthcare provider.
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Revisit Compression Therapy:
- Since you're already using compression garments, ensure they are the appropriate size and type. Consider discussing with a certified fitter about different levels of compression, as some may offer better support for your specific symptoms.
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Request Another Specialist Consultation:
- If possible, seek a second opinion from another vein specialist or a vascular medicine expert. Express your symptoms in detail to ensure they understand your concerns fully. Don't hesitate to advocate for yourself until someone addresses your needs.
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Consider Supplements with Caution:
- While on Xarelto, it's essential to be cautious with supplements. Some can interfere with blood clotting. Always consult your healthcare provider before adding anything new. Vitamin D and Omega-3 fatty acids may offer general health benefits without high risks, but again, confirm this with your doctor.
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Focus on Mental Well-Being:
- Your mental health is equally important. Consider engaging in mindfulness practices or counseling to help manage anxiety related to your health and symptoms. Breathing exercises or gentle yoga can also promote relaxation and might alleviate some stress.
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Explore Additional Therapies:
- Beyond manual lymphatic drainage, explore therapies like physical therapy, which can offer exercises tailored to improve venous health and help with swelling. Some patients find relief with techniques focused on strengthening legs and improving circulation.
Remember, your feelings are valid, and seeking relief from persistent symptoms is important. You deserve to be listened to and your experiences taken seriously. Should new symptoms arise, or if you feel your condition worsens, prioritize seeking immediate medical attention. Always keep advocating for your health; you're doing a great job by being proactive and seeking support.
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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:** - **Portocaval shunt size: 9.9 mm** (blood bypassing the liver into the inferior vena cava) - **Arteriovenous shunt size: 4.4 mm** - **Portal vein size: 6.1 mm** (patent) - **Three nodular cystic lesions** located in the perivascular area, with largest measuring 11.6×20.7 mm, enhancing during the venous phase - Liver features a heterogeneous architecture, exhibiting irregular enhancement - Gallbladder appears elongated and slightly enlarged - Other abdominal organs exhibit normal findings **RADIOLOGIST’S ASSESSMENT:** "Congenital portosystemic shunt indicative of Abernethy malformation; less likely arteriovenous malformation (AVM); cannot dismiss the possibility of localized liver lesions." **ADVICE:** Seek consultations with an abdominal and vascular surgeon. ### Blood Tests (August 1, 2025): **Complete Blood Count:** - WBC: 10.44 × 10⁹/L (normal range) - **RBC: 2.1 × 10¹²/L** (LOW - indicating severe anemia) - **Hemoglobin: 69 g/L** (CRITICALLY LOW; normal is 117-166) - Platelets: 403 × 10⁹/L (elevated) **Biochemistry Analysis:** - 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 - **Portocaval shunt: 9.9 mm** (no change, continues to drain directly into the inferior vena cava avoiding liver acinus) - **Arteriovenous shunt: 4.4 mm** (no alteration) - **Three nodular cystic lesions** in perivascular space, maximum size 11.6×20.7 mm, enhancing in the venous phase - **Portal vein: 6.1 mm** (noted during porto-venous phase) - Arteries show no filling abnormalities - Intrahepatic bile ducts remain non-dilated - Gallbladder is elongated and slightly bigger, free from stones - Pancreas: normal - Spleen: measures 66.9×38.5 mm (not enlarged), splenic vein is 3.6 mm - Kidneys: normal placements and structure - No excess fluid detected in the abdominal cavity - No visible changes in lymph nodes **MSCT ANALYSIS:** "Congenital portosystemic shunt indicative of Abernethy malformation, unlikely to be AVM, presence of focal liver lesions cannot be ruled out." **RECOMMENDATION:** Engage with an abdominal and vascular surgeon. --- ## RECENT BLOOD WORK (December 2025 - January 2026) ### Complete Blood Count (January 19, 2026): - 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. 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