Feeling Lost and Frightened About My Health
Overview: 18-Year-Old Female, Height: 5'2" (USA). Current Medication: Emgality. Ongoing Health Issues: Detailed in the post below. Hello, I’m currently facing an overwhelming situation with my health, and despite my efforts, no medical professional seems to provide clear explanations. It’s disheartening to experience so many health challenges at a young age. A few years back, I was involved in a significant accident. While I walked away from it, I soon began to experience a range of symptoms that have since been identified as vestibular migraines, occipital neuralgia, Chiari malformation type 1 (although surgery isn’t necessary for now), gastroparesis, insomnia, sleep apnea, as well as issues related to bladder and bowel function, dysautonomia, autonomic dysreflexia, sexual dysfunction, syncope, and a mostly resolved traumatic brain injury (TBI). Initially, I never received a neurological examination, despite my bladder and bowel issues appearing immediately, but later on, upon consulting new doctors, I underwent testing. The findings indicated a widespread concern without a definitive pattern, suggesting that something is indeed amiss. My MRI revealed spinal epidural lipomatosis, starting in the thoracic region, and it appears to have extended throughout my cervical spine as well. Although I have lost weight since the two scans, my condition seems to be deteriorating. I can walk unassisted, but my gait tends to deteriorate significantly after physical exertion, leading to falls or foot drop. What could be contributing to all this? Many specialists indicate that SEL shouldn't be responsible for such a wide array of issues. I’ve tested negative for autoimmune disorders and I have never contracted COVID-19. Is there a possibility that I could have sustained a spinal cord injury that went undetected due to a lack of comprehensive testing? Additionally, I frequently experience severe headaches that align with autonomic dysreflexia episodes when I need to relieve myself or even during moments of sexual arousal. Once the triggering factors are addressed, my blood pressure returns to normal. I’m truly exhausted by living this way at a young age and, most frustratingly, not receiving clear answers regarding my health situation. Any advice or insights would be greatly appreciated.
Answers (1)
7/14/2025, 10:40:39 PM
OpenHealth AI
I understand that you are feeling overwhelmed and frightened about your health, especially given the complexity of your conditions. It's natural to seek clarity and support when dealing with such a wide array of symptoms at a young age. Your situation is indeed multifactorial, and it's important to prioritize understanding and managing your health.
Key Points:
- Your symptoms may stem from a combination of factors, including your known conditions, neurological issues, and possible complications from your accident.
- It’s crucial to manage symptoms systematically and to keep track of any changes.
Explanation:
Chiari malformation, spinal epidural lipomatosis (SEL), vestibular migraines, and conditions like dysautonomia can each be significant on their own and may interact, leading to a complex web of symptoms. The SEL, while it typically doesn’t cause widespread symptoms, can potentially influence spinal function and contribute to related issues.
Your experience with autonomic dysreflexia, severe headaches, and worsening gait after exertion points towards a nervous system that is particularly sensitive, possibly due to your history of trauma. The possibility of an unseen spinal cord injury or other neurological explanation may exist, especially given your symptoms.
Next Steps:
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Symptom Journal: Start keeping a detailed diary of your symptoms. Note when they occur, their severity, and any triggers or alleviating factors. This can help identify patterns and provide clarity for your healthcare team.
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Management of Symptoms:
- Headaches: Consider keeping a headache diary and monitoring any patterns, including dietary triggers and hydration status.
- Bladder/Bowel Function: Implement a routine that aligns with bathroom schedules to help manage dysautonomia episodes.
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Physical Activity: Engage in gentle, supervised physical activity to maintain mobility without overexerting yourself. Focus on balance and stability exercises.
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Sleep Hygiene: Since you mentioned insomnia, establish a bedtime routine to improve sleep quality (avoid screens before bed, create a tranquil sleeping environment).
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Review with Specialists:
- Since previous medical visits have been insufficient, consider requesting a comprehensive evaluation by a neurologist or a multidisciplinary team familiar with complex cases involving your conditions.
- They may suggest further imaging or testing that could reveal more about your neurological health.
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Seek Support:
- Connect with support groups for individuals with similar conditions. Sharing experiences and solutions can provide reassurance and new strategies.
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Addressing Mental Health:
- Given the emotional toll of your health issues, consider speaking to a mental health professional who can help you cope with the anxiety and frustration regarding your situation.
Remember, it's essential to keep advocating for your health and seek out healthcare professionals who will listen to your concerns. You deserve clear answers and a comprehensive approach to your care. Hang in there; reaching out and seeking the right help is a strong step forward.
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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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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.