Living with a Throat Perforation: A Personal Account
For several years, I have been dealing with a perforation in my throat. This condition arose after enduring severe acid reflux, coupled with a history of binge eating and intermittent smoking. Due to this perforation, stomach acid escapes and seeps into the tissue between my skin and skull, ultimately affecting my bloodstream. Remarkably, I no longer feel any nerve sensations throughout my body, which is an odd experience considering my situation. Despite regular visits to my healthcare provider and undergoing numerous endoscopies, the source of my discomfort remains elusive, as it has not been detected through these procedures. The only additional examination conducted has been a CT scan. Although my blood tests yield mostly normal results, my kidney function appears to be suboptimal, yet this alone has not prompted further action from my doctors. I'm reaching out to see if anyone has encountered a similar issue or has ideas on how I might persuade my medical team to take my condition more seriously. Any insights or experiences you could share would be greatly appreciated.
Answers (1)
7/13/2025, 12:20:32 AM
OpenHealth AI
Thank you for sharing your experience. Dealing with a throat perforation and the related complications can be incredibly challenging and may lead to significant discomfort. It's understandable that you want to find effective ways to manage your condition and gain more traction with your medical team.
Main Points:
- Regular follow-ups and clear communication with your healthcare team are vital.
- Consider lifestyle adjustments that may alleviate symptoms and improve your overall health.
- Document your experiences thoroughly to present to your doctors.
Explanation: A perforation in the throat, especially arising from chronic acid reflux, can indeed lead to a range of symptoms and complications. While you appear to be receiving some medical care, expressing your concerns and symptoms transparently can help you advocate for more tailored and thorough evaluations. The absence of nerve sensations is concerning and warrants a detailed discussion with your healthcare provider.
Your condition may require comprehensive management strategies that go beyond standard tests. Lifestyle factors such as smoking and diet can significantly impact your symptoms, particularly with acid reflux.
Prioritized Next Steps:
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Document Your Symptoms: Keep a detailed diary of your symptoms, including any triggers for discomfort, changes in sensation, and how they affect your daily life. This information can help your doctors understand your condition better.
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Communicate Effectively: During your next appointment, express the full impact of your symptoms on your quality of life. Use your symptom diary to make your concerns very clear.
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Seek a Specialist Consultation: If you haven't already, consider asking for a referral to a gastroenterologist or a throat specialist who has experience in managing complex cases like yours.
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Lifestyle Adjustments: Focus on plant-based foods, reduce processed foods, and consider portion control to help manage acid reflux. Additionally, if you smoke, seek support to quit as smoking exacerbates acid reflux and overall health issues.
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Hydration and Dietary Care: Ensure you are well-hydrated and discuss dietary choices with a nutritionist who may provide tailored advice for managing both acid reflux and nutrition for kidney health.
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Regular Assessments: Advocate for regular evaluations of your kidney function and any changes to your condition—an ongoing monitoring plan could be beneficial.
Please know that you are not alone in this, and advocating for yourself is key. Let me know if you need more details or specific information.
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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.