Overcoming Medical-Related Trauma
At 40 years old, I'm currently prescribed 30 mg of Vyvanse, 2.5 mg of LDN, and occasionally take Naproxen. I've been diagnosed with adenomyosis and a small, deep lesion of endometriosis located on my left uterosacral ligament, as well as mild to severe degenerative disc disease affecting multiple levels of my lumbar spine. My downward spiral began nearly eight years ago when I first experienced debilitating pain in my left sciatic nerve. It was accompanied by bouts of extreme fatigue, joint discomfort after sun exposure, and intense chest pain, culminating in a confusing mix of symptoms that have since blurred together in my memory—perhaps intentionally as a coping strategy. In my effort to simplify my situation without going into a long-winded narrative, I've consulted various healthcare professionals, attempted numerous treatments, undergone extensive testing, and faced a series of frustrating experiences. Despite a few positive encounters, the negative ones have certainly left a mark. I suspect I am grappling with medical-related post-traumatic stress disorder (PTSD). Nowadays, attending any medical appointment feels overwhelmingly disheartening, stirring up memories of past events, regardless of whether the provider treats me well. I recognize that stress and mental health challenges may have exacerbated some of my symptoms, but it raises the constant question: what came first? Over these eight years of struggle, my conclusion has been that the anxiety surrounding doctor visits often outweighs any potential benefit. However, there is one final referral that I feel is essential, one that has even been suggested by another physician. I am exhausted from the relentless cycle of appointments. My reluctance to schedule this visit stems from a deep-seated dread of encountering more unnecessary stress and disappointment without thorough investigation. I worry that endometriosis may be affecting my sciatic nerve, or at least irritating some nearby nerves, as I now experience random periods of tingling and numbness from my waist down while walking. Doctors often point to my lumbar spine as the source of my troubles, but they can't truly understand the sensations I am experiencing. Is there any guidance on how to move past this fear and the PTSD that feels tied to my medical journey, or am I merely perceived as an overly concerned patient? Though I acknowledge that not all medical professionals are negative influences, the bad experiences have certainly etched themselves into my mind. I'm just so weary.
Answers (1)
7/29/2025, 8:10:50 PM
OpenHealth AI
First, I want to acknowledge that navigating a complex medical history can be incredibly overwhelming and emotionally exhausting. It's understandable to feel apprehensive about medical appointments, especially in light of your past experiences. Here are some key points to consider and actionable steps you can take to address both your health concerns and the anxiety associated with medical visits.
Main Points:
- It's important to address both your physical symptoms and the stress related to medical experiences.
- Strategies are available to help you manage anxiety around appointments.
- Self-advocacy and preparation may empower you in seeking the care you feel you need.
Explanation:
Your history suggests that both your physical symptoms—related to adenomyosis, endometriosis, and degenerative disc disease—and the emotional toll from medical experiences are intertwined. The feelings of anxiety and dread regarding doctor visits can indeed be exacerbated by prior traumatic interactions, potentially leading to a cycle of avoidance that impacts your overall well-being.
Understanding that your feelings are valid is an essential first step. Medical-related PTSD can manifest through avoidance behaviors, flashbacks, and anxiety in situations reminiscent of previous traumatic encounters. This can make seeking care feel daunting, even for necessary appointments.
Specific, Prioritized Next Steps:
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Journal Your Feelings: Begin keeping a journal to express your feelings about medical experiences. This can help clarify your concerns and identify triggers related to anxiety.
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Prepare for Appointments: Before the appointment you're apprehensive about, write down your main concerns and questions. Bring a supportive friend or family member if possible, who can help advocate for your needs and ensure you feel heard.
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Communicate with Healthcare Providers: At the start of your next appointment, consider openly sharing your feelings about medical visits. Acknowledging your anxiety can help create a supportive environment where the provider is more attentive to your needs.
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Coping Strategies: Explore stress-reducing techniques, such as deep breathing exercises, mindfulness, or gentle yoga, which can promote relaxation and help mitigate anxiety when you feel overwhelmed.
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Consider Professional Support: If possible, seek support from a therapist or counselor experienced with medical PTSD. They can provide coping strategies, help reframe your experiences, and offer emotional support tailored to your journey.
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Identify Positive Influences: Take note of any healthcare professionals who have treated you well. Prioritize those who are empathetic. Establishing a rapport with a provider can make a significant difference in your experience.
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Simple Follow-up Care: Don't hesitate to break down your visits into shorter, focused appointments. This can prevent feeling overwhelmed and allow for thorough discussions without the pressure of extensive examinations.
Remember, your health journey is just that—yours. Taking it one step at a time can gradually ease your concerns and empower you to seek the care you deserve. You are not alone in feeling weary; it's a significant struggle, and seeking support is a positive and courageous step towards finding relief. Let's focus on working through this together, and know that it’s okay to prioritize your well-being on your terms.
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7-Month-Old Child with Abernethy Malformation - Exploring Treatment Options
# 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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