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View Full Version : Anyone know about Esophageal Motility Disorder?


texas1107`
02-17-2008, 12:36 PM
Dh has this and am wondering if anyone on here knows someone with it.
Dh has been suffering for over a year and NOTHING is helping.:wall:

bethany
02-17-2008, 03:00 PM
I'm a speech-language pathologist and this is commonly seen when folks have a history of acid reflux (and some other things). The esophagus is a smooth muscle that uses a stripping motion to move food toward the stomach (think of squeezing toothpaste down out of the tube).

Commonly, it is recommended that folks eat softer foods, make sure he is chewing REALLY really well, wash every bite down with a drink and go SLOOOOWLY...

Has he seen a Speech-Language Pathologist to help? Feel free to PM me...

HTH

texas1107`
02-17-2008, 06:19 PM
He sees a Gastroenterologist. He has all the testing, barium swallow, endoscopy, CT scans with and without contrast, manometry, xrays. Manometry shows the throat working 60 and 40% only.
It doesn't matter how long he chews, even after putting in the food processor, or drinking liquids when swallowing, he still chokes on everything. Other than chicken, he hasn't eaten meat in over a year, no veggies, fruits or bread.
My problem is this, the Gastro told him that he doesn't know what else to do for him. We have spent a LOT of money, no insurance, for him to tell us this? Don't tell me that with the technology these days, my 44 year old husband has to live the rest of his life choking on food. I'm not talking about FEELING like he's choking, I mean, face white, lips blue, choking.

bethany
02-18-2008, 03:29 PM
I'm so sorry. I find it unacceptable that the gastroenterologist has said he doesn't know what else to do. You need to see a speech-language pathologist. Make the request of your primary care physician for a referral and see if there is something that can be done to help. He needs to have better nutrition than just chicken. Please in the mean time look into supplement drinks like Ensure, if you haven't already. I'm so sorry you are going through this.

WildMountainHoney
02-18-2008, 03:42 PM
If it is just motility and not a valve problem, I don't think this would work, but my father had what is called achalasia, and by endoscopy they used a balloon to basically "break" the valve at the end of the esophagus so that food could no longer back up waiting to get through.

I hope they are able to do SOMETHING for your dh! :hug:

iza
02-18-2008, 04:13 PM
I second the speech-language pathologist suggestion. It is probably the most competent specialist you can see for these kinds of problems. I don't know your husband's situation, but perhaps you could also look into seeing a psychologist? My mom is a counselor and she had a few patients with this problem. She looks at anxiety issues with the patients. She also went through it herself. During a period of very high stress, she choked on her food once, and developed a swallowing phobia. It really wasn't fun, she would cry at pretty much every meal because she was just choking all the time. :pout: But it's all gone now, and she eats anything she wants.

You definitely need some help, your husband can't go on like this. Good luck! :hug:

texas1107
02-18-2008, 06:23 PM
Not sure what a speech-language pathologist can do for throat muscles not working.
Nope, he was tested for Achalasia, but the LES is working fine, he did have the dialation when they did the endoscopy "just in case" said the doctor even when he didn't think it would work, and no, we didn't pay that, I refused because he already said that he didn't think it would work before.
As for anxiety, not sure on that either. With all the test, we know that the throat muscles are really not working and it isn't pychological.
Wow, thanks for all the adivise!! I guess because I had never heard of it before, I didn't realize how many others would know what it was.

iza
02-18-2008, 06:33 PM
Bethany is definitely more the person to ask, but my understanding is that speech-language pathologist also deal with swallowing problems, not only speech. Maybe it would be a good idea to look at websites and see what they can do for your husband, and see if this is the kind of help he needs. Are there any support groups for this syndrome? Check it out! Maybe a support group can give you ideas on where to find help, and treatments your husband could try.

:hug:

bethany
02-18-2008, 07:56 PM
yep. The speech language pathologist is the "swallow specialist" in the medical world. They may have tips and techniques and may be able to interpret things in a different manner than a gastroenterologist. We actually train people to swallow again after strokes, head injuries, sometimes it's needed after heart attacks and surgeries, in the elderly, in children, the list goes on.

When I said "I find it unacceptable" I meant that it's unnacceptable to me that people make it sound like there is no hope. Your dh is too young to have to continue to suffer like this.

I hope you find something that helps.

texas1107`
02-18-2008, 08:26 PM
yep. The speech language pathologist is the "swallow specialist" in the medical world. They may have tips and techniques and may be able to interpret things in a different manner than a gastroenterologist. We actually train people to swallow again after strokes, head injuries, sometimes it's needed after heart attacks and surgeries, in the elderly, in children, the list goes on.

When I said "I find it unacceptable" I meant that it's unnacceptable to me that people make it sound like there is no hope. Your dh is too young to have to continue to suffer like this.

I hope you find something that helps.

Well, I told my husband that I don't accept that there is nothing that can be done for him. I really appreciate you for letting me know about this. I never would have thought of your specialty. You wouldn't by chance know of anyone in Texas would you?:happydance:

bethany
02-18-2008, 08:36 PM
I don't know anyone personally, but i'm going to PM you...

Abbily
02-19-2008, 11:34 AM
Well, I told my husband that I don't accept that there is nothing that can be done for him. I really appreciate you for letting me know about this. I never would have thought of your specialty. You wouldn't by chance know of anyone in Texas would you?:happydance:

I don't know where you are in Texas, but here in Austin I do know a good SLP. She works for a school district (Florence) but she may also do private practice... or if not she probably has professional contacts. If you are near Austin, PM me and I'll ask my friend.

cheesiesmom
02-19-2008, 11:04 PM
Well, I'mnot a speech pathologist, or medical professional or anything else, but I have Inclusion body myositis, an autoimmune disease. There are several versions of this, polymyositis, dermatomyositis and difficulty in swallowing is very common. At this point I simply make sure I have a lot of liquids when I eat and chew slowly and carefully. My medication is a particular problem since the pills I take are difficult to swallow. However, I check in on the Boards at The Myositis Association (www.myositis.org) and a number of people have discussed a type of surgical procedure which has helped tremendously with swallowing problems. You might look there for some solution. I know this is a major difficulty. I thought I was going to choke to death on a half of a calcium tablet. I have since given those up taking my chances with osteoporosis over choking to death.

Good luck to your DH!!

Sunshine's Mom
02-20-2008, 11:19 AM
My dad has what this sounds like. There is an esophogeal ring in some people's throats. It's mostly heriditary from what I understand (my grandmother had it, dad has it, a blood cousin has it). About every 2 years or so dad starts with the choking, etc., and we know that he has to have the ring "busted open" as we call it. It's an outpatient procedure. They give him some valium to get him sleepy and comfortable (he usually goes to sleep), they give a liquid local to the throat and go in with a balloon and inflate it until it stretches open. We usually stop for waffles on the way home because he's so happy he can eat normally! He's good for a couple of years after that.

I hope you can find the help you need. It can be very disconcerting at first. Please talk to the doctor about this being a possible reason for his problem. Good luck.

texas1107
02-20-2008, 11:32 AM
Thank you! I will look at that site.

Sunshines mom, that sounds like he has his LES stretched. That at least, we could deal with. And, I'm not sure that dh may have been misdiagnosed and his LES may be what is wrong, because, what he describes and where the food seems to be getting stuck is what I read about the LES, but, the dr. said that his endoscopy showed nothing wrong and did the dilation, "just in case" and that the manometry shows his muscles are at 40 and 60% wroking. I am trying to get him to go to someone else, but, right now, we are living paycheck to paycheck for the first time in 15 years. It's difficult right now, but, I will get him to someone else soon.