31M, 164cm, 82kg - Concern About Long-Term Effects of Substance Use and Medical Dismissal
It has been a couple of months since I last used any substances. Currently, I am experiencing several troubling symptoms. When I’m sober, I observe that my right pupil is noticeably larger than the left, particularly in dim lighting. Additionally, I occasionally see flashes of light when I shift my gaze and suffer from persistent floaters and visual disturbances. Balance has become a challenge for me, and there’s a slight tremor in my right hand. Moreover, I often notice that my head and hands feel flush. My anisocoria fluctuates, making it harder to detect in brighter conditions. Furthermore, there’s a perennial slight pinkness in my left eye that suggests some form of inflammation. My eyelid on the same side also appears droopy. Throughout my life, I had never sought medical assistance, but when I finally did, I felt dismissed by healthcare professionals. They often brush off my concerns, possibly because of my young age and seemingly robust health. However, deep down, I sense that something is wrong. I have engaged in risky behaviors involving high doses of stimulants administered intravenously and survived, but I no longer feel like my normal self. It’s concerning that nobody seems to take my situation seriously. I am neither psychotic nor do I possess any background of anxiety disorders. My foremost concern revolves around the possibility of having a brain tumor, an aneurysm, or an arterial issue. Yet, whenever I advocate for imaging tests, I encounter resistance from the medical staff. All I wish for is reassurance that I am not facing immediate health threats or dying as a consequence of my past decisions. My goal is to attain optimal health without the fear of sudden collapse. I have compiled an exhaustive list of my symptoms and worries. Would it be beneficial to present this information to my general practitioner, or might they perceive me as merely paranoid? - Persistent daydreaming or zoning out - Visual disturbances including visual snow - Occasional light flashes in low light environments - Poor nighttime vision - A creaking sound in my neck or ear on the right side during substance use (now resolved) - Numbness and tingling around my right eye that intensifies when lying down - Anisocoria with a potentially dilated right pupil (uncertain if the left isn't dilating adequately) - Eyelid droop - Tremor in my right hand - Gradually worsening clumsiness - Difficulty with word retrieval and trouble performing simple mental arithmetic - Inconsistent diastolic blood pressure readings between arms (a difference of 10-14 mmHg) - Facial flushing; my entire face, palms, and chest turn bright red - Vasoconstriction in my extremities; red fingertips and pale fingers.
Answers (1)
8/14/2025, 10:11:09 PM
OpenHealth AI
Given your history and the symptoms you're experiencing, it's understandable that you have significant concerns about your health. It's essential to take your symptoms seriously, especially since they seem to be affecting your daily life. Let's address your worries and outline next steps you can take.
Main Points:
- Symptoms and Concerns: Your symptoms—including anisocoria (uneven pupil size), visual disturbances, tremors, and balance issues—require further evaluation.
- Immediate Health Risks: While it's natural to fear serious conditions like brain tumors or aneurysms, many of these symptoms can have multiple explanations, and seeking a thorough assessment is vital.
Explanation:
Anisocoria can sometimes indicate neurological issues, especially when accompanied by other symptoms like visual disturbances or a droopy eyelid (ptosis). This could relate to a variety of conditions including, but not limited to, side effects from substance use, neurological conditions, or vascular issues. Fluctuating diastolic blood pressure readings and flushing can also signify other underlying health concerns. Seeking clarity and assurance about these symptoms is not paranoia; it shows you care about your health.
Next Steps:
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Document Your Symptoms: Create a detailed log of your symptoms, including when they occur, their severity, and any triggers. This will help your healthcare provider understand your situation better.
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Consult Your General Practitioner (GP): Request an appointment specifically to discuss your symptoms. Present your symptom log and express your concerns clearly. Emphasize how these symptoms impact your daily life and your desire for thorough evaluation.
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Advocate for Specific Tests: If you continue to feel dismissed, considering mentioning specific tests like an MRI or CT scan. You can say something like, “I would like to rule out any serious underlying issues based on my symptoms."
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Seek a Second Opinion: If your GP does not take your concerns seriously, consider visiting a different healthcare provider or a specialist (such as a neurologist) who may have more experience with complex cases.
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Stay Engaged in Self-Care: Maintain a balanced diet, stay hydrated, and engage in light exercises to help manage your overall health while you pursue medical care. Avoid stressors that could exacerbate your symptoms.
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Support: Consider talking with a trusted friend or family member about your experience to help you feel supported during this process.
Reassurance:
It's perfectly valid to seek help and reassurance regarding your health. The goal is to ensure you feel safe and secure about your well-being. Remember, you deserve to have your health concerns taken seriously. You're taking an important step by addressing this now, and with persistence, you can achieve the clarity you need. If you have further questions or need assistance, I'm here to help.
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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:** - 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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? 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