OpenHealth Q&A

Seeking Help for My Wife's Swallowing Difficulties

Hello everyone, I'm reaching out in hopes of connecting with individuals who might have valuable experiences or insights to share. For the past two years, my wife has been struggling with significant swallowing difficulties. What initially started as a minor issue has progressively worsened, and she now relies on a feeding tube to maintain her nutrition. During this time, we've consulted numerous medical professionals, but unfortunately, this has led to more questions than answers, alongside mounting medical bills. We find ourselves at a point of desperation, unsure of where to turn next. We sincerely hope that someone may have suggestions or possible explanations for her condition. To provide some context regarding her situation, here are a few key details about her journey and condition: **Age**: 25 years **Weight**: 115 lbs / **Height**: 5 feet 5 inches **Medical Background**: - Diagnosed with Retrograde Cricopharyngeal Dysfunction (R-CPD) - This issue has been present for as long as she can remember. - Tested positive for toxic mold exposure, with levels showing: - Aspergillus: 1.56% - Penicillium: 3.20% - Stachybotrys Chartarum: 3.40% **Procedures Undertaken**: - Botox treatment to the Cricopharyngeal muscle: - 75 units injected in October 2024. - Percutaneous Endoscopic Gastrostomy (G-tube placement): - Completed in June 2024. - Throat dilation: - Performed in June 2025. **Diagnostic Tests Conducted**: - 8 Upper Endoscopies conducted over two years, indicating tight Upper Esophageal Sphincter (UES). - Esophagram (Barium Swallow study) and Modified Barium Swallow showed no issues. - Esophageal Manometry revealed high pressure at the UES. - Neurological evaluations, including a brain scan and autoimmune testing, yielded no findings. - Tests for muscular disorders did not uncover any abnormalities. **Specialists Consulted**: - Gastroenterologist - Otolaryngologist (ENT) - Neurologist - Speech therapist (attended for 9 months without noted improvement) **Conditions Excluded**: - Myasthenia Gravis - Polymyositis - Multiple Sclerosis (MS) - Esophageal Motility Disorder **Chronology of Symptoms**: In July 2023, she began experiencing inflammation and allergy-like symptoms, feeling as though her throat was constricted and having difficulty swallowing saliva. Initially, we thought it might be related to allergies while living in Dallas, but this was later dismissed. Although she could eat solids at first, by November 2023, she had to limit her diet to soft foods only. By January 2024, her ability to swallow any food, including water, vanished, necessitating an emergency room visit for rehydration. Subsequently, she was restricted to liquids for six months, resulting in significant weight loss and further ER visits. By June 2024, the G-tube was placed, and she started consuming a 100% formula diet. In October 2024, Botox injections provided temporary relief—improving her ability to tolerate liquids significantly and allowing for small amounts of soft food. Unfortunately, after relocating and losing the attending physician who understood her case, the Botox efficacy diminished, and other doctors incorrectly attributed her struggles to an eating disorder or anxiety. Our current location’s medical professionals have declined to provide Botox again, despite previous success. One doctor we had recently turned to offered throat dilation treatment, which worked temporarily before reverting to previous symptoms. Today, we remain without clear answers regarding her condition. She can manage to swallow liquids but often relies on additional support to help with the process, experiencing a choking sensation due to a perceived delay in the sphincter function. I’m grappling with the reality of navigating this challenging situation without a definitive diagnosis or solution, and I dread the thought of her enduring life dependent on a feeding tube. Any insights or suggestions would be immensely appreciated. Thank you for taking the time to read this message. Warm regards, Johnathan

Answers (1)

7/6/2025, 12:40:42 AM

OpenHealth AI

I'm very sorry to hear about your wife's struggles with swallowing difficulties, which must be incredibly challenging for both of you. It’s understandable to feel lost in such a complex situation. You’ve provided a comprehensive overview of her medical history and the various approaches you've taken, which is very helpful.

Main Points:

1. Swallowing difficulties can arise from various underlying conditions.
2. Your wife has experienced significant interventions but continues to face challenges.
3. A multidisciplinary approach may offer new perspectives and solutions.

Explanation:

Swallowing difficulties, especially in the context of Retrograde Cricopharyngeal Dysfunction (R-CPD), involve complications with the muscles that control the upper esophagus. Your wife's experiences with Botox and dilation suggest a mechanical component affecting her swallowing, but the gradual worsening of her symptoms and the response to treatments can leave questions about the underlying cause. Environmental factors, such as mold exposure, might also be influencing her symptoms, given her history.

Next Steps:

1. Nutrition Consultation: Since she relies on a feeding tube, working with a registered dietitian who specializes in feeding and swallowing disorders could help optimize her nutritional intake and devise a strategy that considers her unique needs.

2. Seek a Specialized Swallowing Clinic: If you haven't already, look for a clinic or center specializing in complex swallowing disorders. They often have a team approach that includes gastroenterologists, ENT specialists, speech therapists, and dietitians who can collaboratively reassess her condition.

3. Consider a Comprehensive Review: Request a thorough review of prior test results and treatments from a different set of specialists, possibly at a tertiary care center. A fresh perspective might uncover overlooked connections or alternative approaches, including additional imaging studies or novel therapies.

4. Engage in Support Groups: Look for online or local support groups focused on swallowing disorders. Connecting with others who have similar experiences can share insights and coping strategies that might be helpful.

5. Explore Management Options for Anxiety: Since some doctors have attributed her challenges to anxiety, working with a mental health professional could help address any psychological aspects, providing her with more coping strategies.

6. Documentation: Keep a detailed diary of her swallowing experiences, dietary changes, and any symptoms that emerge. This record can be invaluable for new doctors assessing her condition.

Reassurance:

I understand how overwhelming this situation is, both financially and emotionally. Remember, continued communication and persistence in seeking out specialists who understand your wife's history can lead to new discoveries and improvements. You are advocating effectively for her, and it's important to maintain hope and continue pursuing the best possible care. Please let me know if you need further advice or resources.