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Brie (@brie87144)

Esophagus issues

Digestive Health | Last Active: Sep 19, 2019 | Replies (100)

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@kanaazpereira

Hi @brie87144,

I see that Teresa, @hopeful33250 has given you some great information; thanks so much Teresa. I wanted to welcome you to Connect as well, and introduce you to a few members who have discussed some similar symptoms.
@amoll157, @dhuffman, @ladawki143, @lee28, @sfrigon, @klsxoxo, @tammyjean, @tgirl, @fjg827, @jimhd, @ryman, @margo42, @dash99999, will you join me in welcoming Brie, and adding your thoughts and experiences?

You may also wish to view this discussion on Connect: Achalasia, http://mayocl.in/2n7zND4, where you can read about a recent update from Mayo Clinic on Peroral endoscopic tumor resection, or POET, which has been been shown to achieve very successful outcomes in the treatment of esophageal dysmotility. Here’s a direct link, too: http://mayocl.in/2mxsMJ7

It must be quite worrisome to undergo all these tests, but according to what I found from a bit of research, the video barium test and endoscopy will look at the ‘body’ and muscle of the esophagus, whereas the neuro-speech assessment and the manometry will determine how well you can swallow water, and whether that affects your speech.
I would encourage you to view the link that @hopeful33250 has given, which describes the test in detail.

@brie87144, do you have any suggestions or insight for Connect members who share some of these symptoms? Did you have to make major dietary changes?

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Replies to "Hi @brie87144, I see that Teresa, @hopeful33250 has given you some great information; thanks so much..."

Thank you for replying! Weirdly I haven’t been to worried. I just like to be well knowledgesd in areas even if it doesn’t pertain to me. The only thing that worried me is seeing the neurosurgeon to find out if I have chiari malformation. But that’s a whole different ball game. And anything that can distract me away from that is good research haha. I am definitely going to look at those as soon as I get to my computer. Everything is so small on my phone.

Ummm as far as suggestions not really, I eat little as possible besides thin protein shakes cause I can’t get much else down.

Thank you again for the reply

Hello, Brie, welcome to the community. I am not sure I have anything to offer except to wish you the best of luck with your tests. I have had a swallowing problem since high school. Only recently has anyone even tried to find the problem and do anything. I have had some tests and had my esophagus stretched. My problem is at the top of my throat. Once anything actually starts down it is usually fine. Liquids are harder for me and they told me to thicken them. I have asked to be sent to a speech therapist several times but my doctors don’t want to do that. They talk about a feeding tube. Sometimes I just wish people could understand that I do have a problem. I will be anxious to know how it all works out for you. It is a terrible condition to have and I hope it all works out for you.

My pcp is setting up an appointment with the speech therapist. It’s hard to see a connection between speech therapy and dysphagia.

Jim

@brie87144 I applaud you for wanting to be well-knowledged! It is SO IMPORTANT to go into appointments with questions based on your reports and research that you have done. Most doctors appreciate a patient who is well prepared for their appointments. As far as suggestions, have you tried holding your breath when you drink? In our discussions on Connect, many of us have discussed that and it seems to make a difference. Keep in touch and let me know how you are doing. Best wishes for a good day! Teresa

@jimhd Hi Jim: The speech therapist is a good idea. They have a way of evaluating your speech which helps diagnose other problems. It is a great idea! The speech exercises that you can do might help strengthen the area involved with swallowing as well as speech. My speech therapist is one of my favorite medical professionals! She has been very helpful not only with a stronger voice, but has also helped with overall strength in the muscles that affect swallowing. Teresa

Hello jimhd.

A GOOD Speech pathologist person is in perfect order for treatment of dyphagia problems depending on the type of Dysphagia you have.
But first what type of dysphagia problem do you have? Is it oropharyngeal dysphagia or is it another type? and what is the severity level you are having?

Speech pathologist (therappist) can do a number of test to determine to level of swallowing condition you are having and then decide what physical therapy that can be used to possibly improve your condition.
Test such as MBS Video esophagram or FEES test are 2 examples.
From there they could use what is called NMES treatments, as one example of treatments.
In this case they would use the VitalStim therapy, which is an electrical stimulation to the throat muscles.

How do I know this above information?
Well, I am on my 3rd journey with cancer since 1973. Two of the journeys have been dealing with the salivatory cancer, right side in 1973 and the left side in 2012.
I have now had both parotid glands removed due to cancer, 1973 and 2012 and have had radiation therapy after each.
But my problem with dysphagia started back in the 70’s and was gradually getting worse over the years.
back then there was little knowledge about getting help for the condition.
It wasn’t until 2006 until the problem was confirmed. And it was 2008 before I found out about any kind of treatments available.
By then it was to late to really help my condition but I was willing to try it.
It was done in group sessions of about 4 to 5 people at one time.
This pathologist had 6 instruments available and that was the reason the groups.
Each of us had a different condition that caused the swallowing problems, from radiation therapy to strokes. and some extremely severe and others less severe.
Then in 2012 I went through radiation therapy again but on the left side.
2 years after that I could no longer swallow anything, not even water.
Two speech pathologists completed the MBS video test and determine it was so bad that when I tried to swallow it was just flowing right into my lungs and stopped the test immediately.
I also cannot speak anymore as the tongue muscles do not move anymore along with the throat muscles not working.
So one speech pathologist gave me a series of exercises to do so that it could help make me say short words .
I can do that a little but sentences at all.
I know use a Boogie Board to do all my communications, plus email and text messages.

So I hope I have enlightened you on the connection of a GOOD speech pathologist and dysohagia.

Sorry this is so long but there’s so much I had to say.
So it may sound stupid or like someone doesn’t know what they are talking about when the patient is recommended to a Speech Pathologist but that is the wrong attitude.

I hope this helps you and you can email me back.

By the way Mayo Clinic flat out refused to see me when my Radiation Oncologist was trying to help me find out why I lost the capability to speak and swallow due to the tongue and throat muscles not working.


GOD BLESS,

Tim

Hi @squaredancer,

Welcome to Connect. You will notice that I removed your personal email from this public discussion; posts to the discussion board are public, and we don’t want you getting unwanted spam etc. We recommend sharing personal contact information by private message as it is a more secure, private option.

Thank you so much for all the information and insight you’ve offered. The medical world is continuously advancing, changing, and often, unbeknownst to us, different branches/sub-specialties become indirectly linked to each other; it becomes confusing to understand why we may need to consult an expert from another discipline!
And it’s always a good idea to be an advocate for your own health; ask questions, share experience, start conversations…just as we do here, on Connect.

@squaredancer, you have been on a tough journey; do you have any questions for Connect members?

Thank you Tim, I am new on the Mayo board and recently signed up for some subjects’ news letters.
We can learn from others sharing. I have noticed a slight change in my voice and and for “swallowing”issues my Gastro will stretch my esophagus, I don’t want any more stretching. My Gastro physician has retired, now to find a replacement, he was caring and knew my insides well.

@ryman thank you for you’re kind words. I have issues at the top as well there’s times I can’t get anything down into my throat at all. That’s frustrating on top of everything else. Thicker liquids or substances are definitely more of an issue for me than anything else. Really a feeding tube?! That doesn’t sound like fun at all. Well none of the fixes sound like fun. I’ll be sure to update after my next round of tests to see what happens. Again thank you for your kind words. I hope they will find a better alternative for you.

This was for @ryman sorry for it not going to the right place.