Understanding MALS and Ehlers-Danlos Syndrome
Recently, I received a diagnosis of Median Arcuate Ligament Syndrome (MALS), where a ligament is constricting my celiac artery. At 42 years old, I also contend with Ehlers-Danlos Syndrome, post-traumatic stress disorder (PTSD), irritable bowel syndrome (IBS), along with feelings of depression and anxiety. In 2013, I faced significant health challenges, including a stroke, a uterine rupture, and a hernia. Currently, my medication regimen includes loperamide, Xanax, Atorvastatin, Prazosin (which has unpleasant side effects for me), Bentyl, and as-needed doses of Tylenol or ibuprofen. The recent findings regarding my celiac artery led me to seek a referral to a gastroenterologist. However, from my research—consulting reputable sources like the National Institutes of Health and various medical journals—it seems that my condition may involve vascular complications, particularly concerning given my Ehlers-Danlos Syndrome, which is manifested through severe pain, nausea, vomiting, and diarrhea. Most days, my pain levels fluctuate between eight and ten on the pain scale. I frequently experience subluxations (partial dislocations) and can often manage to reset them myself. I've also had a shoulder fusion, a rubber shoulder replacement, and several other surgical procedures. But the pain I endure now surpasses any of those previous experiences. Unfortunately, the earliest appointment I have with the gastro specialist is in February. My primary care physician is working to find me another gastroenterologist who can see me sooner. However, I can't shake the question—is this the right type of specialist for my situation? Should I consider consulting a vascular surgeon instead? It’s been daunting, and I find myself feeling anxious. This pain is unbearable and has put my job at risk, leaving me feeling truly scared about my future.
Answers (1)
7/22/2025, 10:31:06 PM
OpenHealth AI
It sounds like you are facing multiple significant health challenges, including Median Arcuate Ligament Syndrome (MALS) and Ehlers-Danlos Syndrome, and I truly empathize with the pain and anxiety you are experiencing. Given your symptoms and complex medical history, it’s important to prioritize assessing your pain and managing your health effectively.
Key Points:
- Consulting the Right Specialist: A gastroenterologist is appropriate for MALS as they can assess gastrointestinal symptoms and any related complications. However, given your Ehlers-Danlos Syndrome and the potential vascular complications, consulting a vascular surgeon may also be beneficial.
- Pain Management and Symptom Relief: It’s essential to address your pain levels and other debilitating symptoms while awaiting your specialist appointments.
Explanation:
MALS can cause significant abdominal pain due to compression of the celiac artery, leading to digestive issues, especially when combined with Ehlers-Danlos Syndrome's impact on connective tissue. The fluctuating pain levels you’re experiencing indicate a need for careful management. Additionally, EDS can complicate other conditions, leading to joint issues and subluxations, which you're managing well by resetting them yourself.
Next Steps:
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Consider Seeking a Vascular Surgeon:
- Inquire with your primary care physician about the possibility of an earlier appointment with a vascular surgeon. This specialist may provide more insight into the implications of MALS and your vascular health.
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Symptom Monitoring:
- Keep a detailed pain diary, noting when your pain spikes and any triggers, along with gastrointestinal symptoms. This can help your healthcare team when you see specialists.
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Pain Management Strategies:
- While you're waiting for your appointments, focus on pain management:
- Pain Relievers: Continue using Tylenol or ibuprofen as needed, but consult about limiting usage due to potential side effects with your current medications.
- Relaxation Techniques: Practice deep breathing, meditation, or gentle yoga to help manage anxiety and improve your overall sense of well-being.
- Hydration and Diet Adjustments: Given your IBS, maintaining hydration and a balanced diet tailored to your tolerance can help mitigate gastrointestinal symptoms.
- While you're waiting for your appointments, focus on pain management:
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Emotional Support:
- Consider seeking support for your anxiety and PTSD, whether through therapy, support groups, or mindfulness practices; these can provide psychological tools to cope with your health challenges.
It's understandable to feel overwhelmed, but there are steps you can take to improve your situation and prepare for your appointments. Please remember to reach out for support when needed. You're doing the right thing by actively seeking answers and help.
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