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janey

Oropharyngeal dysphagia

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I was recently diagnosed with Oropharyngeal dysphagia which is different from esophageal dysphagia which some people with scleroderma have that causes poor motility in the esophagus. My problem has always been getting to food into the esophagus. Once it's there, it goes down. I had a videoflouscopy swallow assessment done last week and it showed that I'm unable to initiate a swallow with the back of my tongue due to weak muscle in my tongue. It also showed that my epiglottis doesn't move and therefore leaves my wind pipe exposed when food enters the esophagus, thus the possibility for aspiration. It was very interesting seeing it all in action or should I say "inaction". From my research it appears that oropharyngeal dysphagia is probably more due to my polymyositis than the scleroderma. (Merck Manuals) My symptoms have been choking on water, air, spit and little tiny pieces of food that get stuck in the back of my throat (which the pictures showed as getting stuck between the tongue and the epiglottis.) My doctor is going to prescribe a couple of visits with a speech pathologist who can teach me mouth exercises and new ways of eating to help reduce the effects of this condition.

 

Based on the size of my bluejeans it hasn't caused me to lose any weight and I still eat pretty much whatever I want; however, it does make eating a challenge at times. If I can make it through a meal without a coughing fit, I consider it a success.

 

Has anyone else been diagnosed with this and if so, what are you doing to help remedy it? Your feedback would be appreciated.

 

Big Hugs,


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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Hi Janey,

 

I have some of this, as found in barium meal. I sometimes have trouble forming a bolus correctly (the tongue doesn't do what it should). I was just chewing on a chewy cookie, and my jaw and tongue actually were getting fatigued. I feel like food gets stuck high in the esophagus, but when they did the study, endoscopy and manometry, it showed the lower esophagus was inactive. Seems like the entire system gets affected.

 

Mando.

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Janey, I'm really really sorry you have oropharyngeal dysphagia, for two reasons. One is because you don't need any further complications at all, from either the scleroderma or the polymyositis.

 

Another is because it hopelessly challenges me, spelling-wise and will be a real challenge to keep straight on the website. It looks like letters drawn at random from a Scrabble game.


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Hi Janey,

 

Very sorry to hear of your problem. I have not been on the forum for a very long time due to many problems that have occured during the past few months. The list is mind boggling. It is not easy for me to use computers at this time due to pain issues but was compelled to respond to your post. I too was just diagnosed last week with oropharyngeal/esophageal dysphagia. It also extends to the beginning of the esophagus only. My tongue has lost its ability to clear food at the back of the tongue and what they called an absent swallow reflex which did not happen constantly though. The bolus of food just flew like yours down the throat with airway open. Luckily I did not aspirate and hope you did not either. The video was interesting to watch as you said. Mine also showed food pooling behind the epiglotis which just builds up if I don't clear it with a drink. This really is a terrible disease as we all well know. I too am booked with a speech therapist for 6 weeks. I used to work with this therapist at a nursing home so we know each other which makes this a little easier to digest. No pun intended. They diagnosed the problem as scleroderma for me and have read a few articles in the medical section on this site I believe. They also attributed part of the problem to the Barrett's esophagus. Both scleroderma and barrett's has affected my vocal cords too. Speech will also try to help with my raspy harsh voice now which they have diagnosed as reflux laryngitis with laryngospasms which means my larynx closes off due to the reflux and can not breath at that specific time and the larynx is inflamed with an onion type skin. There is not alot of information anywhere on onion skin except for lipoid proteinosis which is another story but they have found it in connective tissue disease also. Janey I will be thinking of you next week when I start speech therapy and wish you well also and success with your treatment. Would like very much to keep in touch to see how you are doing.

 

With gentle thoughts,

Judy


A happy heart is good medicine.

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I am a nurse newly diagnosed I have had the raspy voice issues. Of course because of my mouth dryness I drink large amounts of water an notice that I am choking frequently on it. Is this how yours started? Just wondering if mine is something I should have looked at now? I cannot say I choke on foods yet. Thanks for the information. Best of luck to each of you.

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Thank you all for your replies and hugs!

 

Shelley - try saying it 3 times! I've given up spelling it out. Thank goodness for cut and paste. :lol:

 

Judy, Based on how you described your video, doctors would have a hard time telling ours apart. Sounds like we have the exact same problem. I have my first visit to a speech pathologist next Tuesday so that will be interesting. Let's compare notes. I think we'll both benefit from our experiences. You can get to my email in my profile.

 

Morgan, I do have to wash most all foods down with water. It's like things get stuck in the back of the throat and just sit there. Many times I'll just choke when I take a sip of water, especially cold water and sometime just on my own spit. Cold foods and cold drinks are impossible. Now that I know how it works, I think it's because of the open airway. The cold from the liquid creeps into my lungs and started restricting the little vessels in there. So I cough. That's just a guess on my part. Of course the doctors say "Well, if cold food makes you cough, then don't eat cold food". Any problem with eating should be checked out. I've had the problem for 6 years and it wasn't until I saw a GI that I got an answer. So you might want to have a GI check you out if you haven't already.

 

Big Hugs to you all,

Janey


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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Hi Morgan,

 

Welcome to the forum and wish you well. My participation has been quite limited the past few months probably because I have limited scleroderma with a few new twists, haha! No pun intended again. My voice has been hoarse for a few years which has progressively gotten worse with time. The problem started with having to clear my throat and was not a concern until I heard my voice on a video I was taking one day at my grandson's (by proxy) baseball game. I was cheering him on. It took several times watching and listening to the video before I realized it was my voice and thought this can't be me but it was. With everything else that was going on with my health I let it go thinking it might sooner or later clear up and found it doesn't clear on its own. The sooner you get it checked out the better off you will probably be. You possibly might be able to change some habits to prevent further damage if damage exists. Scleroderma can change things dramatically and it sometimes can happen quickly if it is indeed the culprit. A speech therapist can help you with some exercises and correct how we breathe and talk even with a disease process going on, should that be what is happening. She/he might also refer you to an ENT doctor and or GI doctor. None of my doctors noted a voice change so you might want to start with a speech therapist unless you need a referral. Good luck and take care of yourself.

 

With gentle thoughts,

Judy


A happy heart is good medicine.

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Janey,

 

Thanks for the invite to compare notes. My appointment is not until Thursday so shoot me an e-mail too. You'll go before me! It will be interesting to know if the treatments are similar too. I am kind of nervous about the difficulty swallowing plus all the other symptoms and having to go to a speech therapist. Are you nervous about it?

 

With gentle thoughts,

Judy


A happy heart is good medicine.

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Judy,

Actually, I'm not nervous about it. I've had to make so many adjustments and life changes because of MCTD that this is just something else to deal with. I guess after a while you just start taking things in stride. I'm actually optimistic that the speech pathologist will help with this swallowing issue. The pathologist that was there when I had the videoscope assessment gave me a helpful hint that has already improved some of my eating issues. She said that for mixed foods (e.g.,watermelon (a solid with liquid), cereal with milk, fruit and grains) to tilt your head forward, chew, then raise your head while initiating the swallow from the top of the tongue. That has kept liquids from just shooting down the throat. Give it a try and see if it works for you. I'll let you know of the other hints.

 

Big Hugs,


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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These things may be old wives tales but, they have always worked for members in our family whom have these choking and swallowing problems. 1. A few sips of hot tea when this happens. 2. A glass of water with a tablespoon of apple cider vinegar stirred in it. Drink a couple sips of that. 3. I don't seem to have to many issues with the choking because I always have hot water next to my meal. It is as hot as a cup of coffee. I drink that with most of my meals. Plus, it really clears the throat of debris and makes eating easier. Once you get use to drinking the hot water it seems so natural. No calories either.

My two cents for today.


Strength and Warmth,

Sheryl

 

Sheryl Doom

ISN Support Specialist

(Retired) ISN Chat Moderator

International Scleroderma Network (ISN)

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Hey Janey & Canon

 

This is all news to me too...so I can't offer any tid bits on it...but I sure hope your appointments go ok...and things get better for you both because of them of course!


Sending good wishes your way!

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Janey, Sorry to hear about your new diagnosis with your esophagus, but am glad to hear that a therapist will be able to help some. Your symptoms sound similiar to symptoms I've been having on occasion for about 2 1/2- 3 years. now. Was when first started my symptoms with the dysphagia would only occur 2-3x a month, but in past 6 months Ive had swallowing difficulties 1-3x a week. My swallowing difficulty occurs mostly at the dinner meal or almost anytime I try to eat to much of a bread product. like 1 or 2 slices of toast. The food feels like it gets stuck in my throat. Trying to then wash it down with water doesn't even work, as once it starts, my throat seems to lock right up, to a point I can't even get saliva down. While these episodes(is what I usually refer to them as) occur, anything I try to get down including saliva, comes back up. The episodes can last anywhere from a couple of minutes to over an hour. Then its as if I feel a sort of release in my throat and I can swallow again.I have had aspiration pnumonia 3 x in past. I have had many EGD's(a scope down throat) to look and see if I had a stricture, which I did not have, or if stretching the esophagus would help,which he said would not help in my case,the muscle was just weak. The EGD was also to look at the ulcers I had in my throat, I have not yet had a swallowing test. At one time the Dr. scheduled some sort of swallowing test but I chickened out and canceled when they told me I would swallow some sort of tube in part of the test &that they would take pictures of as I swallowed, because I have a real bad gag reflux & got scared I wouldnt be able to do it. I do have an appt soon with my GI Dr. and he may want to try & schedule that swallow test again. I do take two GI meds. One called Nexium for reflux & one called Reglan which I was told helps with motility, therefore would help with the swallowing, & i know this helps some, because at times when I have forgotten to take it before the meal, I've had an episode. Patty

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Sheryl,

Thanks for the wives' tale about the hot water. I'll give it a try. I'm going to have to forego the vinegar, since vinegar is one of my choking triggers.

 

Patty, I'm sorry to hear about all of the problems that you are having. I, too have had several swallowing tests, but they have all been for the esophagus. It was not until the GI doctor ordered the "videoflouroscopy swallowing assessment" that they finally identify the true culprit of my swallowing problems. So maybe you should suggest that to your doctor on the next visit. In this test you the only things you swallow (or try too) are some barium water, pretty tasty pudding, and a cracker. No tube down the throat. So it was really easy. Please let me know how your appointment goes and it you find out anything.

 

Big hugs to you all,


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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