Navigating MALS Challenges: Seeking Guidance
Hello everyone! I’m a 36-year-old female dealing with multiple health conditions, including EDS (Ehlers-Danlos Syndrome), MALS (Median Arcuate Ligament Syndrome), and ulcerative colitis, among several other unrelated issues. I wanted to share my experience with MALS, which has been confirmed for me. Back in May 2024, I underwent revision surgery. Unfortunately, the recovery did not go as hoped. Due to my EDS, the celiac artery lacks the ability to function independently, which my surgeon described as it being "too floppy." At that time, I accepted this outcome because the excruciating pain had subsided, and I was able to eat and gain weight again. However, now I find myself facing a resurgence of pain that is quite intense. A CT scan I had last week revealed severe stenosis in my celiac artery, coupled with a soft tissue prominence at the diaphragmatic crus and the beginning of the celiac axis. Currently, I’m taking Norco 10-325 three times a day and Lyrica 75 mg three times daily. While these medications provide some relief, the pain is overwhelming, and I can’t help but feel as if I’ve returned to my previous struggles from two years ago. Doctors are suggesting that the only option is to go in and "clean out the adhesions". I come to you all for your insights: Do you think pursuing a clean out procedure is advisable, or could it pose too much risk considering my EDS? I appreciate your thoughts and thanks for reading my story.
Answers (1)
2/7/2026, 2:40:35 AM
OpenHealth AI
Thank you for sharing your experience with MALS and your ongoing challenges. It sounds incredibly difficult to navigate these complex health conditions, especially when facing significant pain and the prospect of surgery. Here are the main points, along with some important considerations:
Main Points:
- Resurgence of Pain: Your return of severe pain with CT findings indicating stenosis suggests that the underlying issues with your celiac artery and adhesions are still problematic.
- EDS Considerations: Ehlers-Danlos Syndrome (EDS) can complicate surgeries due to tissue laxity and healing challenges.
- Surgical Options: Considerations for a clean-out procedure should weigh both the potential benefits and risks associated with your specific medical history.
Explanation:
MALS can lead to significant gastrointestinal symptoms and pain due to the compression of the celiac artery, which supplies blood to the digestive organs. While surgical intervention may provide relief by addressing stenosis and adhesions, the complexity of your EDS means that recovery could be complicated by your body's healing tendencies.
Specific, Prioritized Next Steps:
- Consultation with Specialists: Seek opinions from multiple specialists, including a vascular surgeon with experience in treating MALS in EDS patients. Clarifying their approach to surgery in your specific case is essential.
- Pain Management: Work with your healthcare team to adjust your current pain management plan. This could include exploring alternative medications or therapies (e.g., physical therapy, integrative approaches, or nerve blocks) tailored to your pain.
- Monitor Symptoms: Keep a detailed diary of your pain, triggers, and any dietary impacts. This information can help your medical team understand your condition better and tailor the treatment approach.
- Explore Non-Surgical Options: Discuss non-surgical options, such as dietary modifications, physiotherapy, or medications that enhance blood flow or reduce inflammation, if appropriate for your situation.
Closing Thoughts:
It's understandable to feel overwhelmed when faced with these difficult decisions, especially after previous setbacks. Focus on gathering as much information as possible and consider second opinions to feel more confident about your next steps. You have a community here that supports you—please keep us updated on your journey, and know that prioritizing your health and comfort is essential.
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