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Cricopharyngeal Dysfunction (Difficulty Swallowing)
Hi,
I developed cricopharyngeal dysfunction and difficulty swallowing in the past 6 months. I currently can't eat anything quickly (takes me sometimes an hour and a half to finish a small meal like a quinoa vegetable soup). I have to have most things either in liquid or have water nearby as it just gets stuck. I no longer eat "normal" foods like sandwiches and pasta etc. Mostly soups with pieces in them and smoothies. I have lost weight. I suspect silent reflux and covid contributed although no doctor has been able to confirm either theory. I do not have many allergies. My brain MRI did not show any neurological cause. I do have some cervical issues (MRI showed some degenerative change at C5-C6 and C6-C7) but the neurologist did not think it impacted swallowing. My recent endoscopy was normal but my manometry test showed higher than normal pressure in upper esophageal sphincter. I am working with a speech therapist and the modified barium swallow study she ordered also showed the dysfunction while eating and drinking. I am now working with an ENT who plans to do an additional dilation of the sphincter (GI dilated from 15 mm to 18 mm during endoscopy) and a botox injection to the cricopharyngeal muscle. I am wondering if anyone has had a Botox injection to help with cricopharyngeal dysfunction and, if so, what was your experience with this? Also, if anyone else has experienced cricopharyngeal dysfunction - did it get better? What helped?
Thanks!
Nina
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I don't remember any of the details, but my niece's husband had something like this. It was a somewhat gradual process and eventually got to the point that even swallowing was difficult and he had a massive weight loss. They live in Sweden so the healthcare process is different there. He initially had some type of an outpatient procedure to try and open the trachea/esophagus. That failed and he was streamlined for inpatient surgery. There was not a mass or anything similar to that. I'm sorry I've forgotten what the name of what the disorder was. The surgery was highly successful and he is now completely well. I hope you can get people with experience for the treatment that's been recommended for you.
Thank you for responding! It's just nice to hear that other people do eventually recover from dramatic swallowing issues. I hope to be one of those people someday. It has been a gradual process for me as well, but Covid seemed to precipitate it (perhaps coincidentally, it's hard to know for sure). As an aside, nice to hear they live in Sweden - my mother is Swedish and I spent a year there as an exchange student after high school (I'm now 49). Going back there this summer to spend some time with family, although I'm a little concerned about how I'll manage the food situation. I suppose there are soups and smoothies everywhere!
What a fun coincidence. They live near Malmo in the countryside. I’m sure if you’re with family with a kitchen you won’t have any issues. Have you looked at recipes and diets for people that have their jaws wired for recovery after a surgery? My husband had jaw surgery relative to a dental issue and had his jaw wired. So he was on a liquid diet for some time including winter holidays. You might get some good ideas on how these people fulfill their diets. Best wishes
Malmo is a nice area, we’ll be stopping there at some point during our travels. Thanks, yes, I was doing puréed foods for a while and did some research on liquid diets. At this point, I have learned some tips and tricks for how to mostly keep my weight from decreasing further. All best, Nina
I had pharyngeal dysphagia and had a gastric tube places due to severe malnutrition. I went from 115 to 86 lbs. I nor anyone else knows what caused this. Possibly Covid but I was not tested at the time of illness. Symptoms began in April, G-tube placed in August. I started speech therapy with therapist who specialized in dysphagia in September. My ability to swallow dramatically improved by end of December. I wish the G-tube feedings were starting earlier before reaching a severely malnourished state. I believe the exercises helped with strengthening the swallowing muscles and return functioning of the pharyngeal nerve over time. My laryngeal wall weakness also improved. I’m back to a normal diet. It all began with feeding Ill, a sore throat and pain radiating from the right side of my neck to my right ear for approximately one month. The difficulty swallowing began with in a couple weeks of my illness.
Thank you for sharing. That is a dramatic weight loss. I’m glad that the speech therapy helped. I also think the exercises are helping me. I can’t help but think that viral illnesses can precipitate swallowing issues for some people. I know my issues got worse after a virus in September. Just when I was starting to see some improvement by mid January, I got Covid, which set me back again. Glad to hear you are well now and able to eat a normal diet. Gives me hope.
Hi
I had nasopharyngeal cancer treatment in 2006, and yes - there were issues and difficulties with swallowing food - where I have to have liquid at all times during meals. The biggest issue came about during the COVID pandemic where we had to work from home - for myself, there was NIL interaction and/or communication with anyone at all. That was when my dysphagia sets in - that is where I have problems with speech and swallowing - even with liquids. There were times when I just could not form the words - and my speech was slurry. I was in a panic mode - and after going back to my HNC doctor in the hospital and after sever tests and consultations with speech language pathologists - I was told that this is the late effects of radiation. My options right now is to keep doing dysphagia exercises and hope that my situation will not deteriorate to the point where I need a feeding tube inserted, and where I just could not form any words!! My situation has gone to the point where I have to limit my social activities (because of speech issues and people not able to hear what I said and also because of difficulty in swallowing where I have to spit out what I cannot swallow!!)
I am from Toronto, and do have access to one of the best medical care here. At the moment, am doing my best to keep up with the dysphagia exercises - and hoping to avoid having the feeding tube!
Thanks for your comment. That sounds like a lot to deal with. I’ve heard that radiation to neck can impact swallowing quite a bit although I didn’t realize it could affect it so long after treatment. So far in my experience the speech therapy has been quite helpful and makes me feel like I have some control over my body. Even if it hasn’t solved the problem, it has lessened my anxiety about it and it does help to relax me before I eat meals. Like you, I have been avoiding social gatherings centered around food because of fear of choking in public and, also, I feel like not many would want to sit with me as it takes me over an hour to finish a small meal. Have to have liquids with everything as well. I hope the dysphagia exercises help both your swallowing and speech issues. And I certainly hope you can avoid a feeding tube! All the best to you.
Nina
Hear you - I do not feel at all comfortable in having meals in public because when I am not able to swallow, I have to spit out - this I can do in the comfort of my home, but with friends and in public - it is not possible. I used to be on the 'social' side, but ever since the onset of my dysphagia - I am adapting myself and learning to be 'ok' on my own. More importantly is doing dysphagia exercises daily - hoping that it will slow down the late effects of radiation.
Take care !!
How long did you have the dysphagia. I ask because my husband is over 2 months out of surgery and still can't swallow even with doing the swallowing excercises.