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Undiagnosed Dysphagia
Hi everyone,
I’m posting here in hopes that someone might have experience or insight. My wife has been dealing with severe swallowing issues for the last 2 years. It started out mild and continued to worsen over time, where she is now on a feeding tube to get the proper nutrition she needs.
We have seen several doctors over the 2-year timeframe, and unfortunately it has led to mostly wasted time and unanswered questions. And of course, medical debt accrued within that time as well. We are at a breaking point where we don’t know where to turn, and we are desperate in hopes that someone might have an idea as to what might be happening, and even a possible way to cure her situation.
Below I will try and layout the journey we’ve been on, along with any relevant information that might be tied to what she has:
Current Age: 25
Weight: 115 / Height: 5’ 5”
Medical Information:
• Retrograde Cricopharyngeal Dysfunction (R-CPD)
o As long as she can remember
• Tested positive for toxic mold
o Tested out of range for all 3 below (using the ELISA index %)
Aspergillus – 1.56%
Penicillium – 3.20%
Stachybotrys Chartarum – 3.40%
Procedures to help with swallowing or help with feeding without using throat:
• Botox injected into the Cricopharyngeal muscle
o 75 units injected
o October 2024
• Percutaneous Endoscopic Gastrostomy (G-tube placement)
o Installed June 2024
• Dilation of the throat
o Completed June 2025
Procedures and tests to try and identify root cause:
• Upper Endoscopy
o This was performed 8 times over the 2 years
o Result: tight UES
• Esophagram (Baramium Swallow study)
o Result: Nothing found
• Modified Barium Swallow
o Result: Nothing found
• Esophageal Manometry
o Result: High pressure at the UES
• Brain Scan
o Result: Nothing found
• Auto-Immune testing
o Result: Nothing found
• Muscular Disorder Testing
o Result: Nothing found
Doctors seen:
• Gastroenterologist
• Ear Nose and Throat
• Neurologist
• Speech Therapist
o Seen for 9 months with no improvement
Ruled out diagnoses:
• Myasthenia Gravis
• Polymyositis
• (MS)
• Esophageal Motility Disorder
Timeline of events:
July 2023 is when inflammation and allergy symptoms started to appear. She felt like her throat was blocked, having trouble swallowing saliva at times. We lived in Dallas at the time and thought maybe this was allergy related but that was ruled out. She was still able to eat solid foods but progressively got worse, marking November of 2023 when she transitioned to soft foods only. January of 2024, it got even worse, resulting in her being unable to swallow anything, including water. She was admitted into the ER and they gave her fluids to get her back to a normal level. For the next 6 months she was strictly liquids only, with a couple ER visits to get levels back to normal. Significant weight was lost over this time. June of 2024 is when the G-tube was installed, and she started a 100% formula diet through the tube. In October 2024, she was given Botox as a trial to see if it would help, and it did for 3 months. Liquids were roughly 90% better, soft foods were tolerable in small doses. We moved and lost that doctor, and the Botox wore off. We’ve had doctors write her off either having an eating disorder or anxiety, and with us moving we lost the one doctor that was able to see that wasn’t the case. Because of this, where we live now, they have denied the Botox procedure even with it showing it previously helped. One doctor we found couldn’t perform the Botox needed but was able to provide throat dilation as an alternative. It was somewhat successful for 2 weeks but reverted shortly afterwards.
That leads us to today where we still don’t have answers about what’s going on. She can get liquids down but usually will have to hold onto something to force it down. The best way to describe it is she feels like when she swallows, the sphincter is delayed which results in a choking feeling.
I’m having trouble understanding how this could happen with no diagnosis or cure – and the last thing I want for my wife is to live the rest of her live on a feeding tube. I’m hoping there’s a way to have her swallowing back to 100%. Any insight on greatly appreciated, thank you a million for reading this post!
Johnathan
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Hi Johnathan,
What a terrible situation for your wife and for you! That must be very hard on both of you to deal with. Plus all the tests that show nothing is that wrong! It's interesting that they won't allow her to have the Botox treatment which helped. I have incontinence and Botox helped with that for 9 years. But then they decided not to use it again. What have they got against Botox? So, now I'm back to incontinence again!
I would suggest that you just continue to do extensive research to find another doctor and I'm sure you are, considering how thorough your list of procedures that your wife had done is. The only other thing and probably the best is just to pray. Tell God all about your wife's condition and ask for his help. He will be there for you. Sometimes God's answer isn't instant. I had to pray for two years before my migraines went away but they did go away. God will be there for your wife. Also your wife is only 25. Her young body can fight this situation much better than if she was old. Plus she has a loving, caring husband like you to help her through this. That's so important.
I'm sure God will answer your prayers. I'll say a prayer also for both of you.
PML
I think that her R-CPD is at the root of her issue. I'm no MD, but maybe this, from Yalemedicine.org is an answer. How awful for you both. Good luck.
A procedure called a partial myotomy of the cricopharyngeus muscle may be an option for patients whose symptoms do not adequately improve with Botox injections. In this minimally invasive surgical procedure, the surgeon inserts an endoscope through the mouth and into the throat. Next, the surgeon makes a cut partway through the cricopharyngeus muscle. This allows the muscle to relax, allowing air to exit the stomach and esophagus.
@teded25 how far did you move? If within a couple of hours away, perhaps you could still visit that doctor who had the solution to your wife’s problem …? If not, could this former doctor give you a referral to a doctor like himself, where you live …?
I know for sure my swallowing difficulties some years was due to anxiety. Once the cause of anxiety was removed I was able to eat and drink normally, but even now, sometimes I have a problem swallowing (especially “stringy” food items, beef, etc.) to put my head down to swallow