laryngotracheal separation?

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newbie

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Hi,
Anybody had laryngotracheal separation surgery, or know of anyone? It's been recommended for my husband who has Bulbar Onset ALS; apparently it's a fairly un-common procedure.
Thanks,
Newbie
 

Al

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Hi newbie. I haven't heard of it. What is the intended purpose of it?

AL.
 

newbie

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The main goals are to eliminate risk of death from choking (which is pretty high in the current state of things), eliminate the risk of aspiration pneumonia and eliminate the anxiety of multiple daily episodes of strangeling/choking, and to do this without creating the extra maintenance involved with traditional trachs. My husband has 100% loss of speech so there is no compelling reason to preserve airflow through the pharynx because he cannot articulate with the mouth muscles, so no oral or laryngeal speaking device or valve will work. By separating the swallowing part of the throat entirely from the trachea, he would have airway safety. Since he is still very mobile, they think we will have more time to travel, fewer hospitalizations with pneumonia, and will have drastically less anxiety every day. He has strangeling episodes all day long, on food or drink or just his own saliva. He has literally choked on food three times and I had to do the heimlich...a couple of episodes took several attempts before the food dislodged. It's very scary for us both, and painfuI - am not young and have arthritic back - he's had a couple of falls and has sore ribs. With the daily strangels (going down the wrong way but not requiring heimlich), he also has laryngeal spasms so he can't get a breath in nor can he cough anything out. That is also freightening. All of this adds up to a lot of anxiety for both of us. If my husband quit eating by mouth, he'd still strangel on saliva and still have the laryngel spasms. If they paralyze the larynex with botox injections, he'd not be able to eat or drink by mouth and would still have the trickle down of saliva and be at risk for aspiration pneumonia. The surgery sounds drastic but it seems like the best solution the way they talk about it. The Dr. in town who has done the most of this procedure has only done 11. He trained with the surgeon who developed the procedure. And we are in a big city - Seattle - so if there aren't many experts here, there just aren't many experts period! My husband is resistant though because he can still at least make grunting sounds to get my attention, and he would lose that and his sense of smell (which is a large part of enjoying eating - but how much longer would he be able to eat anyway). He also is concerned about having an open stoma, just a hole looking into his trachea. I don't know how either of us will feel about that.
 

elemkay80

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Hi Newbie,

I can't speak to knowing anyone who's had the procedure done or my in depth thoughts on it, but did do a quick research and found at least something for one of his concerns. There seems to be a secondary procedure they can do with it called a tracheo-tracheal puncture that would still allow vocal communication, but would protect the airway. I found an article in the Journal of Otolaryngology that describes a case. I can't post it here, but if you're interested in reading it, you can email me and I'll send it to you as a .pdf. Could be something to talk about with the surgeon who would do your husband's procedure.

My email is elemkay80 @ gmail.com if you'd like it.

Wishing you both the best!
Michelle
 

Al

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Hi newbie. I too did some looking for information and would not want to express an opinion either for or against. If it were me I'd do more research. I tend to try things that I think may help me if they're not too off the wall. I've done the IV IGG, Cytoxan, Lithium and supplements. If I were in the same boat I may think about it but can't say for sure.

AL.
 

Al

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Rose. Take a look at this.

AL.
 

rose

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Thank you Al.

Actually, the post by elemkay80 about the tracheo-tracheal puncture sounds even more interesting to me. I do have a voice, although it fast becomes quavery and weak with use (or eating and drinking). I'd hate to give that up. After I get this next swallow study done I will discuss this with my laryngologist.

Yesterday when she was looking at my vocal cords, one side had a lot more atrophy than the other, and even more since when we looked less than two months ago. I asked her about having the injections in them again as the filler has been absorbed at this point (surgery was last November), and she did not seem to think it would gain me much benefit as it really didn't help my voice. I took it to mean that after the atrophy progresses past a certain point, that the filler does not work. But, this was just how I interpreted it, she didn't elaborate and I was feeling so crummy that I wasn't exactly in a talkative mood.

I added a photo from yesterday taken with the videostroboscope. I put it in my lip atrophy album.

In this particualr session, the camera was fed down through my nose; however, an alternate method and camera can also be used where its aimed down via open mouth (that one I like better) She chooses the method according to what she is trying to get a more accurate look at. Among other things, this time she was looking into the trachea to see if there was any visible pus (eeewh!). She said she saw redness and inflammation but that was all. Which is a good thing. :cool:

....Thank you for bringing this to my attention Al, I'm encouraged that there are options out there. :)
 

Al

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Kool pic. Not sure what it looks like. Kind of like one of those Monk fish. Looks like eyes and a mouth to me. You say that's what a trachea looks like from the inside? Remarkable.

AL.
 

rose

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Al, its even more interesting when the video is actually in progress. I can watch on a screen while she does it. ~ Kind of like in a sports bar, she's got her video monitor for the way she's facing, and I've got mine too, no missing the action that way, LOL. Its confusing to me as to what I'm seeing sometimes, like she'll point out my soft palate, or whatever, and I'll be thinking :confused::

The photo I put in the album is with the vocal cords in the open position.....within the structure around that area, where you can see two round whitish indentations on either side, (as you said, the "eyes") these also change shape when the vocal cords close, and they form a trough shape on either side of the vocal cords, to help shuttle the majority of food or liquid past them rather than it just running over top of them. Its hard to believe that such a tiny muscle group with atrophy can have the huge impact on health that it does.

The NY Eye & Ear Infirmary finally called to let me know they were trying to get me in for some time on Friday for another swallow study.
 

CindyM

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This forum is a source of never-ending wonder to me. To think our members are so well-versed in the latest technology and procedures! Amazing! Thanks for sharing. Cindy
 

rose

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Cindy, the first time an ENT guy wanted to take a look at my vocal cords I didn't know what to expect. I had no idea it was such a common thing to do. Its a regular office visit procedure. It was about 18 months before anyone uttered the words "cranial nerves" or MND to me. Who knew vocal cords were so important!

The technology has grown tremendously. I don't think that vocal cords in movement had ever been observed until sometime in the 1970's. The little fiber optic light and camera is probably similar to what is used for colonoscopy.

My laryngologist did her fellowship under one of the doctors that helped develop it. (the videostroboscope)
 

elemkay80

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Hey Rose,

If you want the article, I still have it saved. Just shoot me an email and I'll send it to you. Email addy is in my prior post.

Michelle
 

rose

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Michelle,

Thank you. I will put something in the subject line to let you know that it is me. you're a brave person to put your email address on here! I like how you spaced it out so that the spam monsters can't snatch it though.

How goes it with the Lyme as a possible cause for you?

take care, and thanks again, :)
 
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