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:
- Swallowing difficulties can arise from various underlying conditions.
- Your wife has experienced significant interventions but continues to face challenges.
- 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:
-
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.
-
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.
-
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.
-
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.
-
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.
-
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.
Related Questions
Are Out-Ear Air Buds Safe for Long Listening Sessions?
I’m a 17-year-old Filipino who has never experienced any ear issues or had medical diagnoses regarding my hearing. Recently, I purchased a pair of out-ear air buds. This design lets me enjoy music without completely obstructing my ears, as the speakers sit just outside the ear canal. This raises a question for me: is it safe to use them for extended periods while studying? I also ensure to keep my phone's volume capped at 60%, so I don’t blast my eardrums. (As an aside, I primarily listen to lofi tracks, which tend to be gentle and instrumental.)
Experiencing a Tingling Sensation in My Lower Lip – What Could It Be?
Greetings everyone, I am a 28-year-old male who does not consume alcohol or smoke. In late April, I underwent surgery to have my lower wisdom teeth removed, and my recovery went smoothly. Recently, however, I’ve started to notice a tingling feeling in the inner part of my lower right lip when I eat firm foods or when I clench my jaw. Additionally, there’s a slight bump in that area that I can feel with my tongue, but upon checking with a mirror, I observe nothing unusual. What do you think this might be? Should I let it be for a couple of weeks, or is it advisable to consult a dentist or a general practitioner? I vaguely recall possibly biting into a Dorito, and its sharp edge may have grazed or injured my lip right before this sensation began.
Seeking Guidance on Health Concerns and Test Results Interpretation
I recognize that this situation should have been addressed much earlier, so I’m reaching out for guidance. I have a mole on my stomach that has been troubling me. Most people would likely be incredulous that I haven’t sought medical advice beforehand, but there are reasons I won’t go into at the moment. I do have a dermatologist appointment scheduled for the 17th related to acne. Should I wait for this appointment, or is it necessary for me to seek an earlier consultation? Would going to the emergency room be more appropriate? This mole has been a part of my body for as long as I can remember, though it has increased in size and raised significantly over time. Just yesterday, I discovered a hole in it, and some dry pus emerged, which is alarming. I fear the prognosis might not be favorable. My blood test results are attached for context; my endocrinologist, the only doctor who truly listens and cares, has been trying to find the root cause of various symptoms I've experienced over the years. Despite being on multiple psychiatric medications that often lead to my concerns being dismissed as either side effects or anxiety, I genuinely suspect there might be an underlying issue. Any insights or advice regarding my situation would be immensely appreciated. Here’s a brief overview of my health status: - **Age**: 33 - **Gender**: Female - **Height**: 5'0" - **Current Weight**: 185 lbs (historically around 120 lbs; previously reached a maximum of 235 lbs while on Latuda, but after discontinuation, I lost 15 lbs without effort and am now actively trying to lose more.) **Specific Health Concerns:** - **Aches and Stiffness**: I’ve been experiencing significant morning stiffness for a long time, but it's now more pronounced and lingers throughout the day. - **Toe Joint Swelling**: A few months back, the joint in my third toe swelled unexpectedly, without any prior injury or unusual activity. Initially red and tender, it now appears larger but less inflamed. - **Color Changes in Toes**: Occasionally, the tips of my toes turn a purplish hue, and they tend to ache when touched. There's also some peculiar itching that I can’t define. - **Foot Pain**: Upon waking, my feet often feel painful, almost as if I'm walking on rounded stones, making it quite uncomfortable to step on them. The joints in my big toes also hurt. - **Knee Pain**: My knees have started to cause significant discomfort, which I don’t recall experiencing even at a higher weight. I often need assistance to get out of chairs in the mornings. Although they feel slightly better as the day progresses, the pain persists even while resting. - **Itchy Legs**: For several years, I endured severe itching in my legs due to Lamictal, leading to bleeding from scratching. It was dismissed as anxiety, but after reducing my dosage from 400mg to 100mg, the itching has improved. This experience led me to avoid seeking help for the mole due to fears of being labeled a hypochondriac. - **Excessive Sweating**: Over the last couple of years, I have dealt with intense sweating that is far beyond what I'd consider normal. My doctors have acknowledged this issue, and while I suspect it might relate to Venlafaxine, the levels of discomfort are overwhelming. I was given a prescription for Glycopyrrolate to help manage this. - **Vision Problems**: When I was ill a few months ago, my vision deteriorated significantly. I found it challenging to read my phone even with glasses. Post-illness, my vision improved somewhat, but it never returned to its original clarity. Unfortunately, my insurance limits me to one eye doctor visit every two years, which complicates matters. - **New Mole**: I noticed a tiny mole on the inside of one toe a couple of years ago, and while it’s small, I mention it since it might be new. I don’t frequently check my moles and can't confirm how many are present or if others have developed. There may be additional details, but I find I need to rest now. Your help and insights would truly mean a lot to me. Thank you for your attention.
Medical Oversights: A Call for Attention on Patient Rights
Key Medical Issues: - **Caudal Duplication Syndrome** - **Endometriosis** - **Potential Bone Infection** - **Negligence in Medical Care** - **Demographic Information**: 33-year-old individual (AFAB), diagnosed with ASD/ADHD, currently prescribed 15 mg of Adderall. **Seeking Insights:** Are there any opinions on the severe medical oversights and infringement of patient rights that have occurred during my treatment? **Presenting Symptoms:** - Persistent pelvic pain - Chronic fatigue - Night sweats - Unpleasant odor and unusual discharge - Abnormal hepatic and immune system test results - Sudden and unexplained weight gain - Mixed incontinence, including complete loss of control that has forced me to leave my job. **Overview of Medical Incompetence**: A pattern of negligence and violations of my rights as a patient has been observed from June 2024 until July 2025. ### Detailed Account of Events: 1. **Overlooked Diagnosis and Absence of Follow-Up (June 2024)**: In June 2024, a pelvic MRI revealed indications of severe endometriosis, anomalies of the uterus, and a possible mass or congenital irregularity. However, no further evaluations or referrals were offered, and I was not informed adequately about my condition. Consequently, my symptoms, including pelvic pain, abnormal bleeding, discharge, and fatigue, continued to intensify over the next several months. 2. **Neglect and Procrastinated Care (2024-2025)**: I visited emergency rooms multiple times due to deteriorating symptoms, increasing inflammatory markers, and unusual imaging results, yet I was consistently refused a referral to a gynecologic oncology specialist. When I requested appropriate assessments, staff responses often included, "You haven't been diagnosed with cancer," which effectively hindered my further pursuit of care. 3. **Trauma and Unprofessional Conduct at the Hospital (July 5, 2025)**: A CT scan indicated issues consistent with organ duplication and raised concerns about potential malignancy or infection. After voicing my frustration about not being heard, I was subjected to a behavioral health hold. I was forcibly restrained by security, separated from my personal belongings, confined in an unsanitary environment, and administered sedation without proper consent. The hospital subsequently misclassified my condition as “Delusional Disorder,” ignoring the substantial clinical evidence validating my fears. This traumatic encounter has resulted in physical injuries, emotional scars, and continued lack of necessary specialist care. I am now considering legal options to pursue claims for: - Medical malpractice and incorrect diagnoses - Breach of patient rights and lack of informed consent - Psychological and physical damages from wrongful detainment I have compiled a comprehensive timeline, summaries of imaging, and supporting documentation, complete with annotations corresponding to slide numbers for reference. I am genuinely concerned that this congenital abnormality may have led to a current bone infection and the potential development of endometrial cancer. **Seeking Advice:** If you were in my situation or if I were someone you cared about, what steps would you take? Furthermore, I can provide images with detailed annotations highlighting findings and critical characteristics if needed.
Could I Have Sustained an Injury to My Penis?
Age: 27 Recently, I attempted a viral joke by inserting a Nintendo DS stylus into my urethra. Initially, it was amusing, but I quickly felt discomfort as it burned, though I managed to push it in almost completely. Afterward, I experienced an itch and decided to remove it. Now, a full day later, I have noticed ongoing sensitivity and a burning sensation on the sensitive underside of my penis. Is this a cause for concern? Even the warmth of my urine adds a tingling and itching sensation, which is beginning to alarm me.