Had swallow study, still questions

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tlcpdc02

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I had my swallow study. I was very nervous because earlier that day. I had eaten and started the coughing/throat clearing that seems to be happening almost everyday now.
I explained my situation to her and she assured me that this was safe and we would proceed with caution. I swallowed three different consistencies and after each one I felt
the need to clear my throat. She didnt have alot to offer other than I am not aspirating.
I ask if this could be situational and that sometimes might I aspirate. She states if that were the case it would be a consistant pattern. She suggested GERD. The ENT doubts
this, as it happens right after or sometimes during eating/drinking. So with constant post nasal drip, strange swallowing and feeling like someting is in my wind pipe. Does this sound like it could be bulbar issues ?
 
I understand its frustrating to not know what is causing your problems, but thankfully, no, it does not sound like bulbar problems.

When we talk about bulbar onset, it implies bulbar palsy, i.e. weakness in the areas controlled by the bulbar section of the brainstem. If you had weakness, something would have shown up on the testing.

There are levels of concern with aspiration, anywhere from the test bolus making its way near to where it could cause problems, to penetration (getting past some of the barriers) to aspiration, a description for when the bolus actually makes it into the windpipe.

If the test would have shown that perhaps you had some of those milder levels ~ for example, if your larynx did not elevate properly for the swallow, or, your epiglottis or false vocal cords not making a tight closure; then, you might reason that "it" whatever "it" is, just did not happen for the test. Something would have been noted if there was a problem. There would have been mention of too much residue left in your mouth, or going up into your sinus cavity, or lack of elevation, etc. But, if she saw nothing, then that is actually a really great thing, as far as your health goes, but, as I noted earlier, can be really hard to take out of sheer bewilderment and frustration.

Please remember that we're only a support forum. All of the opinions you receive here are just that. They're our thoughts. But, I've had a good bit of experience in this phase of the diagnostic journey, and from everything I've learned, you should feel completely at ease that whatever it is that you're experiencing, its not something that is causing you to have problems associated with a weak swallow.

If the SLP thinks reflux/GERD, and your doctor says not, then, you're back to getting more opinions.

You've mentioned post nasal drip, and that will definitely cause coughing. Have you seen an allergist?

Don't discount psychological causes. Stress can cause heart attacks and stroke, so believe me, if it can do that, it can affect many other areas of our health as well.


Good luck to you, I hope you get some good news soon.
 
Rose, is constant post nasal drip common with bulbar? I have that along with a weaker more hoarse voice than normal and my jaws get tired after a lot of chewing. No problems getting food or liquids down but I do feel an odd feeling when swallowing without food / drink.
 
I personally have never heard of post nasal drip, constant or not, being associated with bulbar. Remember, also, that bulbar weakness is not about feeling different (odd when you swallow). Just performance.

Have you tried some sort of antihistamine? Are you using antacid, like prilosec otc? Has anyone scoped your esophagus to see if there is inflamation? Have you gone to an allergist?

Really truly, you need to look elsewhere for the cause of problems you're having. I know its hard, and you may think that you wish for anything just "To Know", but believe me, you don't want this. There is no going back, no happy ending, just more loss.
 
I had my swallow study before I began aspirating, but it showed weakness at the top of swallow arrangement. A good portion of my food was staying in the back of my mouth and not swallowing. I also had clinical tongue weakness and jaw weakness, so I got a lecture about swallow fatigue and a recommended calorie supplement.
 
Rose - I appreciate your advice. I certainly know I "don't want this." I have been taking prilosec as prescribed by my ENT for 3 weeks with no improvement. I've been taking zyrtec for possible allergies but it hasn't helped much other than making it a little easier to sleep. My voice has become more consistently grovelly. My ENT follow-up isn't for another 3 weeks. When you say that "bulbar weakness is not about feeling different (odd when you swallow). Just performance," does that mean that it if you have bulbar weakness your swallow doesn't feel any different? Thank you.
 
Rose, thanks for your take on my situation. I do realize this is coming from personal experience and not a medical degree.
You have been very helpful in your explanation of potential swallow problems. I dont discount the possiblity of anxiety
adding to my symptoms. My concerns are it was such a quick test and does five swallows really represent the whole picture.
I will persue the GERD and allergy possiblity. Believe me I "dont want this" either. I was just surprised by nothing abnormal seen on my swallow study. At least once a day it feels like something I eat or drink goes down the wrong way. Thanks for taking the time to answer
my questions.

Terry
 
Terry (& Lotjo),

I can understand why you could feel like the test needed to go into more depth, but, from what I know about the test, is they try the various consistencies, and if nothing shows up, there is no need to keep trying. Keep in mind that they're watching the bolus on the video monitor as you swallow, and are paying attention, not only to what happens after you swallow, but before, and how the bolus is transported in your mouth before and during the swallow.

Also, they take into account things about you that they observe while you are there interacting with them, even though they may not specify it is part of the test per se.

Theoretically, there could be a slp and radiologist out there somewhere that are not thorough enough, but, it is such a specialized procedure, and therefore the medical facilities that do offer it have a LOT of previous experience by virtue of the competence level needed to be employed in that capacity; and the frequency that they do the test, because so few places do.

I think, that we as a population, just assume that if there is something wrong with us, that our doctors will know what it is, but unfortunately oftentimes it is not that simple. Not to discourage you, but it can take months, sometimes even years to get the full answer. Doctors usually start out with tests to rule out the obvious, and uncover anything potentially dangerous that can be treated, and then after that, sometimes its just a matter of monitoring to see if what is causing the problems develops more clearly, or goes away.


If you are having constant post nasal drip, that is going to affect your voice. Think about how people sound when they have had a cold. Even though their nose may no longer be stopped up, so long as there is extra phlegm, you can hear the difference in their voice.

If you don't show any improvement, and at your follow up appointment, your doctor has nothing new to offer, then ask what your next step should be for a specialist. Ask if there is a laryngologist within the geographic range that you are willing to travel to, and who takes your insurance. Like I've said here before, even though an excellent ENT looked at my vocal cords, and he admitted they did not look quite right to him, that they possibly looked too thin. He told me (rather than me asking, actually) that I needed to see a laryngologist. It was he who said I needed a higher level of expertise. It took me a while, several months, to get in to see her, because of a variety of factors. But, she took one look, and knew what she was seeing. So, the degree of specialization can matter.

To put it into perspective for you, people first started commenting about my voice in October (I did not notice it, it was how I sounded to others rather than to myself) it took until the following August for me to see the laryngologist. But, along the way I saw my gp, who sent me to a rheumatologist, who kept seeing me, but sent me to an ENT, who wanted me to see the laryngologist.

As to your question about if the swallow feels different with bulbar weakness; the changes are so gradual, that no, I did not notice. I was not consciously aware that I now always had food residue in my mouth when I swallowed, but did not always have that during my lifetime. We, as humans adapt, we compensate. Maybe I was extra clueless, but no, I did not know. Now, (for example) when I drink, a little bit of whatever it is will eventually trickle out my nose, so yeah, I'm aware. And yes, I frequently cough when I drink, but, from the very first swallow study I had, which was before I noticed anything, they found several areas of weakness, and miscoordination during the test.

My best advice to you is to try not to focus too much on any of your problems, and to not try to steer your doctors into a particular course of action. If you don't trust their judgement or diagnosis, go to another doctor. Go to as many as it takes until you are satisfied. Just don't go with a preconceived notion that you have "X" wrong, caused by a specific type of illness, and that the doctor needs to see that too.

I genuinely hope you get some answers soon, but please be prepared for possibly being in the diagnostic process for a while.

Good luck to you.
 
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Thanks Rose - you are always so thoughtful and compassionate in your replies. What is your take on the issue I have with a really low sagging soft palate? When I open my mouth without saying "Ahhh" you can't even see my uvula. My soft palate touched my tongue in the back. If I just had the grovelly voice & strange swallowing sensation I would probably be fine but this has me concerned. I've also noticed some tightness & an occasional twitch in my jaw. I wake up several times during the night so I'm suspecting it's affecting my breathing. I have a follow up with the ENT in a week and a half. Thanks for any insight into this. God bless.
 
Lotjo,

I think you should also have a sleep study done. If you've got that much potential blockage, then you're bound to be having some degree of aphasia/apnea at night. Your ENT can do the referral for the study.

While your'e at your ENT appointment, if he/she does not have anything new to offer, then, like I'd suggested to Terry, a laryngologist would be a very reasonable next step. I don't know where you live, but this will most likely (but not necessarily) involve some sort of commute to the appointment.

It takes effort sometimes to get the attention we need from our doctors, but its what you've got to commit to. If you've tried your doctor's suggestions for treatment/therapy, and nothing improved, then its time to be assertive about wanting answers.

good luck to you, let us know what you find out.
 
thanks for the help Rose. I go back to the ENT on Wed. Hopefully I'll learn more about what's going on with me.
 
I had my ENT follow-up. Voice is still hoarse (on & off) and weaker. Swallowing still feels odd. Lots of coughing up phlegm from my lungs which seems worse in the mornings. They ruled out reflux after a month on meds without any improvement. They ordered a barium swallow, chest x-ray & sinus x-ray. ENT insists I shouldn't be concerned that my swallowing & voice issues are from MND, but of course they didn't offer up any other possible causes. Should I call them back and push for a modified barium swallow test or just go with the regular one and see what it shows us?
 
Getting worse everyday. Not looking good.
 
Bulbar ALS doesn't get worse every day so you shouldn't worry about that. You've got something going on but only the Docs and tests will find out. Hope you can relax until you get some results.

AL.
 
Had the regular barium swallow / esophogram. The doc who did it told me it wasn't going to show anything in the throat area - only the esophogous, and that it was primarily looking for obstructions / ruling out reflux. Of course it came back clear. My symptoms showed no improvement after a month on prilosec. I'm thinking it was a waste of time and I should've pressed the ENT for the more in depth modified barium swallow study.

Al, when I say "worse everyday" it's probably an exageration made out of frustration. It's more like something different everyday. Weaker hands, clumsiness, dropping stuff, walked into the doorway with my shoulder twice this week, etc. Related to the bulbar issues, I'm noticing that the back of my throat/tongue area feels tight & almost spasm like at times. No noticible twitching. Just the same strange swallowing feeling mostly on the left side, cough and the same strained, hoarse voice (over 2 months now). When the fatigue hits that's the worst. It just knocks me down. Follow-up w/ ENT later in the week. Follow-up w/ a different neuro in 2 weeks. Thank you for listening. Writing this stuff down helps me cope somehow. Hard to explain.
 
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