Desperate for Answers - Persistent Throat Ulcers
I’m a 22-year-old who has been battling persistent ulcers on the back of my throat and tonsils. These are canker sores, not cold sores or pustules. All tests have come back negative for HSV, other STDs, and strep throat. During these episodes, I feel extremely drained; speaking and eating are unbearable due to the 5 to 15 ulcers that can flare up at once. Despite my diligent dental care, I don’t have any underlying dental problems. I also have Autism Spectrum Disorder, which heightens my sensitivity to sensory issues—this situation is unbearable for me. Often, I notice that the problems arise after I try to dislodge a tonsil stone, only to find that the next day my throat is completely covered in ulcers. This agony can last for weeks. Regular blood tests and B12 levels have returned normal results. The only conditions I’ve stumbled upon online that come close to my symptoms are Behçet's disease and Sutton's disease. I’ve also experienced occasional small blister-like sores in my genital area, which can be indicative of Behçet's, but it seems implausible for me to have such a rare disease. I'm at a breaking point; if I can’t find a solution or treatment soon, I’m not sure I can keep going. My doctor is unwilling to pursue further investigations or run any tests unless I specifically request them, but I’m not equipped to diagnose myself—how can I do her job? Honestly, I feel like I’m just about ready to give up. This is my final effort to seek clarity and assistance.
Answers (1)
8/15/2025, 5:51:37 PM
OpenHealth AI
I understand that you are experiencing significant discomfort from persistent throat ulcers, and it’s important to find effective ways to manage your symptoms and improve your quality of life. Given the complexity of your situation and your medical history, let's focus on understanding possible triggers and actionable steps you can take.
Main Points:
- Possible Trigger: Your throat ulcers may be related to mechanical irritation from tonsil stones, possibly leading to inflammation or ulceration.
- Management Strategies: There are practical approaches to relieve your symptoms and potentially reduce the frequency of outbreaks.
- Consider Further Investigation: Insight into your current condition and communication with your healthcare provider remains crucial.
Explanation:
Canker sores, or ulcerations in the throat, can be caused by physical trauma—like attempting to remove tonsil stones—as well as factors such as stress, dietary deficiencies, or even immune responses. Your diagnosis should primarily focus on symptom management while considering underlying causes. Although it seems rare, conditions like Behçet's disease are more common than known, but it often requires a specialist's insight for a comprehensive evaluation.
Next Steps:
-
Avoid Irritation:
- When you notice tonsil stones, instead of dislodging them aggressively, consider using warm saltwater gargles (1 teaspoon of salt in 8 ounces of warm water) several times a day to help soothe the area.
- Stick to soft, bland foods that won’t irritate your throat during flare-ups.
-
Pain Relief:
- Over-the-counter medications such as acetaminophen or ibuprofen can help reduce pain and swelling. Melting topical anesthetics (like benzocaine) can also help numb the throat.
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Hydration and Nutrition:
- Stay well-hydrated and consider taking a multivitamin or supplementation, especially focusing on vitamin B12, folate, and other nutrients, since you mentioned normal blood levels but dietary factors can play a role.
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Document Symptoms:
- Keep a diary of your symptoms, triggers, and any dietary or lifestyle changes you make. This information can be helpful for you to discuss with your doctor or a specialist.
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Pursue Specialist Consultation:
- If your current healthcare provider is resistant to exploring further diagnoses, seek a referral to an oral medicine specialist or a dermatologist familiar with ulcerative conditions. Presenting the detailed log of your symptoms might support your request for further evaluation.
Final Thoughts:
Remember that you are advocating for your health, and persistence in seeking the right care is important. It can be difficult to navigate this alone, especially with the challenges posed by sensory sensitivities. Try to maintain open communication with your doctor about your needs and concerns, and don't hesitate to seek further opinions if needed. You deserve relief, and there are paths to finding it.
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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? 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.