Your Thoughts on These Swallowing Issues Please

[rhythman]

Hi All

I try not to bother you often. Since an initial ‘panicky’ first 2 months on these boards, I’ve only started 2 threads since Dec.18th, 2009. I’ve been letting the doctors do their jobs, and, as I posted recently, I’ve got an appointment scheduled in late May with a neuromuscular specialist at a teaching hospital, who is also the head of their als clinic. Great.

The reason I’m posting today is because I’m not sure how concerned I should be, nor what to do, about the swallowing problems I’ve had these past 3 weeks.

I’ve had swallowing problems off and on since late August, and some intense choking/coughing episodes, but mostly that was caused by dry foods. It actually subsided for a couple of months, but flared up at the end of February. Since then, it’s been everyday, but also different lately.

I am having more frequent choking/coughing episodes with foods of certain consistency; typically dry, but the past 3 weeks with liquids for the first time. It has been so strange. I can swallow the liquids, but immediately after doing so, I feel like I’m choking. As I noted in another post, this is accompanied by severe ear pain….every time now. The pain I can tolerate, the choking is scary. It is like a finger poking my throat quite hard and that feeling can last for quite a long time after swallowing. Further, drinking causes an almost instant acid reflux reaction…every time. I don’t see any point right now of going back to a doctor (saw an ent again 3 weeks ago) to hear that nothing can be found to cause these symptoms…must be neurological.

I have 2 questions:

1. Is the above paragraph describing the choking/coughing, etc. that I’ve had typical of what you’ve experienced?
2. How long would you let this go on or how bad would you let it get before going back to a doctor? I’ve had more doctors’ appointments in the past 5 months than in the past 25 years, but it seems at this point that only the neuromuscular specialist I’ll see in 9 weeks can diagnose anything.

Thank you all for your time.

 

[BarryG]

rhythman, my experience with disphagia is that firstly my tongue would not move the food around in my mouth so that I could chew it and I used to have to stick my finger in my mouth to help. After that it became increasingly difficult to swallow things of mixed consistency (liquids and solids together) and then thin liquids became impossible but I could still do some solids as long as they were not too dry.

I am not sure if this answers your question so I have one suggestion, try to get a swallowing study done where they have you swallow various consistencies of a barium solution and record the results on a video. I have had several of these done and they really help point out swallowing difficulties.

 

[rhythman]

Thanks for taking the time to respond Barry.

I'll ask my doctor about that test next week. I'm at the point where I want to find out what's going on. I'll know in 9 weeks, or sooner. I expect the neuromuscular specialist, who is the head of the als clinic, will be able to tell me what's up. Obviously, there are diagnoses that I would prefer not to hear, but it's been months and months of tests, no answers, and worsening symptoms. I'm trying to ignore as much as possible, but this swallowing thing is ever present right now.

 

[flutterby23]

Rhytham. I agree with BarryG about getting a swallow study done. I am a licensed Speech Language Pathologist that performs these swallow studies (aka Modified Barium Swallow study) at the hospital I currently work in, daily. These studies performed by an SLP look at the mouth, throat and upper airway. Liquids and solids are given (and pills).
A Barium Swallow is completed by a Radiologist and looks at the esophagus to the stomach. That test would be able to diagnose if you have any reflux going on. This test is only done with liquids and sometimes pills.
I would bring up both options to your doctor to determine which test is right for you. Often times I will do an MBS and find nothing so I refer the person to have a Barium swallow done. I'm sure the opposite may be true as well.
Coughing or choking could indicate you are aspirating (food/liquids getting into your lungs), which is potentially very dangerous.
Typically coughing after you have already swallowed could indicate you have reflux coming back up and spilling over into your airway OR you have some left over food/liquid residue that was not swallowed with the first swallow that spills over into your airway.

Best of luck to you. I hope this helps.

 

[rhythman]

Thanks...that's very informative and does help. I am being insistent with my doctor to get things done. I've been his patient since I was a teen and he was just starting his practice, nearly 30 years ago, so we have a good repoire. I will see the neuromuscular specialist in about 9 weeks, but these swallowing tests seems like they're worth doing. I assume the more test results to take to the als/neuromuscular specialist, the better.

Your information was very informative. The coughing after I've swallowed is always preceded by a strong acidic taste in the back of my throat, so I surmised it might be a reflux thing.

From what I've read, most bulbar onset als patients have trouble swallowing liquids, often more than many solids. I've always found that so strange because liquids are thin, and just go down the esophagus by gravity I assume (as opposed to needing peristalsis)...so I don't understand why liquid issues arise.

Thanks again for your help.

 

[rose]

Rhythman,

I too agree you should have the swallow study done. In fact, I'm really surprised your ENT was not proactive in ordering one for you!

Just an FYI, thin liquids are actually harder for the swallow than thicker. It may sound crazy, but I've not only been told by my doctors and SLP's that water is the most difficult, but, of course also experienced it myself.

To answer your question, what you describe is not typical for what I've experienced. Mine is either coughing after drinking, (or it going up my nose a little if its thin enough) or food simply not moving down with the swallow. It likes to hang around on the top of my tongue after I swallow, and drinking water will not help. Thicker yogurt type drinks will help to clear. I've coughed up gel capsules a full 15 minutes after thinking I've swallowed them... .Also trouble moving the food around in my mouth before the swallow, residue in mouth after swallow. I cannot "chug" anything.

If you're having trouble with acid reflux, this is very problematic for the lungs if inhaled, so its something you should address sooner rather than later.

Good luck, and keep us posted!

 

[rhythman]

Thanks for the info and advice Rose. I have an appointment with my doctor Friday and am going to ask him to order a barium swallow test, based on the advice of people on this thread.

All this is perplexing. In late August, swallowing issues were one of the first strange things I noticed, but food just seemed to fall down my throat...too soon, before I was done chewing. Then, in October, I'd chew forever and nothing would go down...just wouldn't swallow. I had to consciously swallow. Then after that, it was major choking episodes unlike anything I'd ever had. The past few weeks, it's been constant ear pain, reflux and a really weird sensation swallowing water and food. Swallowing problems? Yes, since August, but they are always 'evolving'...weird.

The most annoying thing the past few weeks (4-6) is just feeling ill 24/7. I sleep now 10 hours each night, but feel flu like all the time. I ache from head to toe. Who knows? Perhaps there's more than 1 thing going on.

Thanks again Rose. Take care.

 

[rose]

Take your temperature! Are you running a fever? The first time I had aspiration pneumonia, I ached like that, for a couple of weeks, until my fever finally spiked (to about 103F) it didn't occur to me to actually go to a doctor about it. Are you coughing? If so, and a fever over 101F, then you should go to doc before Friday.

 

[rhythman]

I haven't had a fever lately and don't have one now (I did take it). I do have this occasional 'dry' cough that's been around for a few weeks, but it's not troublesome at this point.

I'll be vigilant if a fever appears or the cough gets worse. With all the acid reflux I've had lately and food not always going down well, I know that aspiration pnemonia is always a possibility.

Thanks for your concern and the 'heads up'.

 

[KANSASTOM]

Rose,
I didn't know that the fluids are harder to swallow than the solids. I have had trouble with swallowing for at least the last nine years, but it is always with breads or something with the same consistency. I find that if I try to eat fast I also get the food stuck in my throat. Did you experience the solid foods getting stuck in your throat first.