Seeking Insight on Complications After Surgery
I am reaching out for assistance regarding my mother's situation. She is 64 years old and recently underwent surgery to remove various masses from her abdomen. During this procedure, portions of her gallbladder and liver were also removed. Unfortunately, it seems there was a mistake, as her bile ducts were clipped, which resulted in her suffering from two antibiotic-resistant infections. She even had a medical emergency, requiring intensive care, where she was unconscious for a few days. Although she managed to recover, she was referred back to the same hospital and surgeon who conducted the original surgery. This has not gone well, as her follow-up care has been problematic. While they did address the initial issues, there has been little progress since then. She has spent a significant time in bed, and physical therapy only began in recent days. Now, they are urging her to relocate to a rehabilitation center, but she is experiencing intense abdominal pain. To add to the complications, they noticed a bed sore that is causing her a great deal of discomfort, and, unfortunately, her concerns seem to be overlooked as they are focused on discharging her. My mother expresses a persistent feeling that something isn’t right. She has conditions known as hypermobile Ehlers-Danlos syndrome, mast cell activation syndrome, and postural orthostatic tachycardia syndrome. Recently, they have speculated that we might have other variations of these conditions because of our thin, fragile skin and visible veins. For instance, I often require adhesive removers for bandages, and I frequently end up with unexplained bruises and thin scars that seem to reopen despite being several decades old. I mention this because my mother is just beginning to navigate the complexities of her own diagnosis, and any shared experience might be useful. She pointed out to her surgeon that there was an unusual area beneath her skin that felt like a hole, and she is guarding her abdomen due to the pain. The medical team performed a CT scan right after they addressed the initial surgical concerns, but I believe another scan might be warranted to ensure that nothing has gone amiss. After laying in bed for four weeks, I am concerned about their expectation for her to walk, especially given that she's had limited physical therapy sessions. From my own experience of being discharged prematurely from hospitals, I worry they are not fully recognizing her conditions or understanding the potential complications. In my case, I had issues related to inadequate stitching during gallbladder and hernia surgeries, leading to complications where my wounds opened up. Could my mother be experiencing similar internal complications from her surgery or issues connected to her surgical site? I apologize for the lengthy message; it’s incredibly frustrating. I hope to gather as much information as possible about the small holes in her skin, the black spot she's mentioned, and the source of her pain following the surgery. While she has had bed sores in the past, none of them looked or felt like this. Thank you for taking the time to read my concerns, and any insight would be greatly appreciated. A photo will be shared in the comments if permissible.
Answers (1)
3/26/2025, 7:50:50 AM
OpenHealth AI
I’m sorry to hear about your mother’s situation and the challenges you're both facing after her surgery. It’s perfectly understandable to feel frustrated when you believe concerns are not being adequately addressed. It sounds like there are multiple complex layers involved, and recognizing the need for thorough evaluation is important. Let’s break down the situation and look at actionable steps.
Main Points:
- Post-Surgical Complications: There may be complications from her initial surgery, especially given her existing conditions.
- Need for Evaluation: Reassessing her abdominal pain and any unusual findings (like the black spot and holes) is crucial.
- Therapy and Rehabilitation: Adequate support and physical therapy are essential for her recovery.
Explanation:
Your mother’s surgical history and current symptoms suggest that she may still be experiencing complications from her surgery. Her existing conditions, such as hypermobile Ehlers-Danlos syndrome, could worsen her recovery due to factors like tissue fragility. The intense abdominal pain could indicate that there's something more serious going on, especially if there are visible changes to her skin, like the holes or spots you mentioned.
Given the history of inadequate follow-up care and her feelings of not being taken seriously, it's essential that her medical concerns—particularly those about the surgical site and pain—are thoroughly evaluated. The soft tissue areas that feel abnormal or painful could signal complications like abscess formation, healing issues, or even internal bleeding.
Actionable Next Steps:
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Request a Comprehensive Evaluation:
- Insist on a thorough re-evaluation from her current medical team, focusing specifically on the abdominal pain and skin issues. Recommend another CT scan if it can lead to a better understanding of her condition. Document all symptoms clearly for her healthcare providers.
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Communicate Concerns Clearly:
- It may be helpful to prepare a list of your mother's symptoms, including the specifics of her pain and the appearance of her skin. Share this with her healthcare providers to ensure they understand the urgency and complexity of her needs.
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Address Bed Sores and Pain Management:
- Ensure that her discomfort due to the bed sore is being treated appropriately. This may involve specific wound care, changes in body position, or even better support surfaces to reduce pressure. Speak with her team about pain management options, including medications or therapies suited for her conditions.
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Monitor Progress and Reassess Rehabilitation Needs:
- Discuss the pace and schedule of her physical therapy. Given her history and current condition, a gradual approach tailored to her needs will be important. Advocate for an adequate transition plan that accommodates her physical limitations post-surgery.
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Seek a Second Opinion:
- If concerns persist regarding the care she’s receiving, consider reaching out for a second opinion from another surgeon or a specialist familiar with her medical history and complicated conditions. Awareness of her unique syndromes will be crucial in managing care effectively.
Taking control of her care by advocating for her needs is essential, and I encourage you to keep pushing for the evaluation and support your mother requires. I'm here to provide further guidance or information if needed.
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