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I Have Laryngotracheal Stenosis
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Author:  RitaAnn [ Tue Jan 12, 2016 4:16 pm ]
Post subject:  Re: I Have Laryngotracheal Stenosis



And of course the good news is that this procedure will be completed long before this time tomorrow.


True. We have a winter storm warning coming in for tonight, so I don't know what time I'll be able to get to the hospital to have this thing removed. I may become desperate and take it out myself. The nurse said I could try that. But I still need to return the monitor and food diary sheets.

Author:  ShineOn [ Tue Jan 12, 2016 9:16 pm ]
Post subject:  Re: I Have Laryngotracheal Stenosis


True. We have a winter storm warning coming in for tonight, so I don't know what time I'll be able to get to the hospital to have this thing removed. I may become desperate and take it out myself. The nurse said I could try that. But I still need to return the monitor and food diary sheets.

Yeah, should you be trapped by the weather, removing the probe on your own will likely not create any additional problems.

It's almost certain that the probe can be self-removed rather readily. And it might actually be more comfortable to do it that way. The only obvious suggestion I can think of is to take it slow and easy as you do so. (Of course, my preference would be to self-remove it in the doctors office with professional staff available to hold my hand while I complain and whine.)

If it were me, after having pulled the probe out at home, I'd coil up the tubing, drop it in a zip-loc baggie, zip up the baggie, and dump the baggie into some sort of opaque bag that I could simply drop off at the doctors office, along with all of the dietary notes, of course.

Author:  Frësch [ Tue Jan 12, 2016 10:23 pm ]
Post subject:  Re: I Have Laryngotracheal Stenosis

I may become desperate and take it out myself.

:rofl:

Author:  Sam Lefthand [ Wed Jan 13, 2016 1:04 am ]
Post subject:  Re: I Have Laryngotracheal Stenosis

Yeah, should you be trapped by the weather, removing the probe on your own will likely not create any additional problems.

It's almost certain that the probe can be self-removed rather readily. And it might actually be more comfortable to do it that way. The only obvious suggestion I can think of is to take it slow and easy as you do so. (Of course, my preference would be to self-remove it in the doctors office with professional staff available to hold my hand while I complain and whine.)

If it were me, after having pulled the probe out at home, I'd coil up the tubing, drop it in a zip-loc baggie, zip up the baggie, and dump the baggie into some sort of opaque bag that I could simply drop off at the doctors office, along with all of the dietary notes, of course.


Use a Milkshake for lube to help get the tube moving, and to control discomfort as the tube is drawn out. :)

Author:  ShineOn [ Wed Jan 13, 2016 1:58 am ]
Post subject:  Re: I Have Laryngotracheal Stenosis


Use a Milkshake for lube to help get the tube moving, and to control discomfort as the tube is drawn out. :)

That's an excellent idea, though I'd prefer that a bit of malt be added to my milkshake.


Ideally, I suspect that doctors should also be including a modest amount of something like promethazine with this sort of test to help deal with nausea and such.

Of course, most people receiving a test like this one probably already have such medicine available in their home. These sort of pharmaceuticals are on the WHO list of what should be readily available from any legitimate pharmacy. Really basic stuff, as it were.

Author:  RitaAnn [ Wed Jan 13, 2016 1:52 pm ]
Post subject:  Re: I Have Laryngotracheal Stenosis

After the monitor stopped recording, I went to the bathroom and anticipated the worst. Once I removed the tape however, the tube came out lickity split. No problemo. :)

Author:  ShineOn [ Wed Jan 13, 2016 2:12 pm ]
Post subject:  Re: I Have Laryngotracheal Stenosis

Way cool.


So, was the whole ordeal as Borg-like as it looked?

You do realize of course that removing Borg implants is typically not so trivial a procedure. While it was quite easy to remove the tube, convincing the nanobots to leave is gonna require a bit more effort.

I think there's a doctor over at sickbay 1 that can help with this. He has a terrible bedside manner, but otherwise he's far and away one of the best doctors around.

Author:  RitaAnn [ Wed Jan 13, 2016 3:03 pm ]
Post subject:  Re: I Have Laryngotracheal Stenosis

Nope. No one tried to assimilate me. :)

Author:  ShineOn [ Wed Jan 13, 2016 4:16 pm ]
Post subject:  Re: I Have Laryngotracheal Stenosis

Nope. No one tried to assimilate me. :)

Yeah, sometimes we go thru such procedures, at first thinking it will be totally gruesome, and then come out on the other side just fine and dandy.


And, of course, we could always look on the bright side of things - the doctor did not recommend drilling holes in your head.

"My God, man! Drilling holes in his head isn't the answer! Now put away your butcher knives and let me save this patient before it's too late!"

Now, that would be scary.

Author:  RitaAnn [ Mon Feb 08, 2016 6:34 pm ]
Post subject:  Re: I Have Laryngotracheal Stenosis

"You have very bad acid reflux." This is what the gastrologist said to me today on my follow-up to the pH test. No shit, Sherlock.

Anyway, the immediate plan is to make another appointment to the specialist in Boston to get another dilation done and talk to gastro surgeons to see about the different options available to reduce the acid back flow. And she wants to see me in 3 months and wants me to lose at least 20 pounds before then. :shock: This is for 2 reasons--to see how committed I am to tackling this problem with the acid and of course, actually reduce the acid. Weight is a contributor to the problem, as it is to the breathing.

Author:  Frësch [ Mon Feb 08, 2016 8:44 pm ]
Post subject:  Re: I Have Laryngotracheal Stenosis

Man, what a saga you have had to endure.
Thankfully they're still offering you options.
It's always a good thing when there are still treatments to be tried that may help.

Author:  RitaAnn [ Tue Feb 09, 2016 10:13 am ]
Post subject:  Re: I Have Laryngotracheal Stenosis

Man, what a saga you have had to endure.
Thankfully they're still offering you options.
It's always a good thing when there are still treatments to be tried that may help.


Yes. The gastrologist said she'd support me in whatever I decide but the down side is neither treatment for the acid reflux is a guarantee to stop the backflow.

Author:  IliseHD [ Sun Feb 14, 2016 1:02 am ]
Post subject:  Re: I Have Laryngotracheal Stenosis

:arrow: OH my goodness RitaAnn! My thoughts are with you. I am still recovery from my bout of pneumonia back in 2014, where I was on life support for 8 days and had heart failure and sepsis. My CT-scans show that I have a mild COPD which continues to be a problem with my breathing as well as scar tissue from pneumonia. I turned 60 this year, so I am not getting any younger. I sympathize with what you are going through. It's very scary when you can't catch your breath doing minor exersion where it never bothered you before. :hug: :hug: to you

Author:  RitaAnn [ Sun Feb 14, 2016 11:32 am ]
Post subject:  Re: I Have Laryngotracheal Stenosis

:arrow: OH my goodness RitaAnn! My thoughts are with you. I am still recovery from my bout of pneumonia back in 2014, where I was on life support for 8 days and had heart failure and sepsis. My CT-scans show that I have a mild COPD which continues to be a problem with my breathing as well as scar tissue from pneumonia. I turned 60 this year, so I am not getting any younger. I sympathize with what you are going through. It's very scary when you can't catch your breath doing minor exersion where it never bothered you before. :hug: :hug: to you


I hear ya! After the first dilation, I was amazed at how much we take for granted. I could actually walk down the hall without huffing and puffing. I have a nebulizer with albuterol but I find it's not effective in helping me to breath since the airway is blocked by scar tissue, so in that I know what you're going through. It only helps rid the congestion which is a side effect of the narrowing airway.

Author:  RitaAnn [ Fri Jul 01, 2016 11:09 am ]
Post subject:  Re: I Have Laryngotracheal Stenosis

I saw a bariatric surgeon on Wednesday to see about getting a fundoplacation, which is a procedure to close the valve above the stomach to keep it from splashing acid into my esophagus and lungs.

Turns out, I may not be a good candidate for that as the motility test for the esophagus I had with the pH test showed it was weak. I need strong reflexes in the esophagus to push food and liquid through to the stomach, otherwise food will just sit there. :shock:

The surgeon told me if that's the case, he and the thoracic specialist will put their heads together and come up with an alternative plan for me. I already told them that I though a gastric bypass would be too extreme, so I'm thinking more weight loss is the next plan. I"ve lost 30 already, but I may need to lose 30 more before they'll do the surgery on my trache.

And that was the summation of my visit to Mass General.

Author:  Izzzatso [ Mon Jul 04, 2016 9:25 am ]
Post subject:  Re: I Have Laryngotracheal Stenosis

Nope. No one tried to assimilate me. :)
Are you sure? You looked kind of borgish in that pic. ;)

Author:  RitaAnn [ Tue Jul 05, 2016 10:27 am ]
Post subject:  Re: I Have Laryngotracheal Stenosis

Are you sure? You looked kind of borgish in that pic. ;)


My breathing is more like Darth Vadar.

Author:  J_dogg82 [ Tue Jul 05, 2016 6:53 pm ]
Post subject:  Re: I Have Laryngotracheal Stenosis

I saw a bariatric surgeon on Wednesday to see about getting a fundoplacation, which is a procedure to close the valve above the stomach to keep it from splashing acid into my esophagus and lungs.

Turns out, I may not be a good candidate for that as the motility test for the esophagus I had with the pH test showed it was weak. I need strong reflexes in the esophagus to push food and liquid through to the stomach, otherwise food will just sit there. :shock:

The surgeon told me if that's the case, he and the thoracic specialist will put their heads together and come up with an alternative plan for me. I already told them that I though a gastric bypass would be too extreme, so I'm thinking more weight loss is the next plan. I"ve lost 30 already, but I may need to lose 30 more before they'll do the surgery on my trache.

And that was the summation of my visit to Mass General.

Congratulations on your weight loss! Keep it up. I'm battling a scale myself. You can do it.

Author:  RitaAnn [ Mon Nov 07, 2016 10:49 am ]
Post subject:  Re: I Have Laryngotracheal Stenosis

I got on the scales yesterday morning and recorded it in My Fitness Pal and I've lost a total of 45 lbs. thus far. I've been at this (seriously) for almost a year.

My sister and me are going to Boston again next week. I'm due for another dilation. The bad news is I don't qualify for a fundoplication (tightening of the lower sphincter muscle above the stomach) because my esophagus isn't strong enough (AKA low motility). So now the specialists need to figure out something else. They are pretty sure the stenosis is caused by acid reflux. Pretty sure, only because all other blood tests for other causes came back negative.

More hurry up and wait. But I've been very fatigued these past several weeks. Part of it is my unresolved health issues and the other of course being this insane election cycle.

I hear people say "I'll be glad when it's over." For me, it depends on the outcome.

Author:  RitaAnn [ Wed Dec 21, 2016 8:57 am ]
Post subject:  Re: I Have Laryngotracheal Stenosis

I'm taking another trip to Boston this morning. This time it's for an office visit with a bariatric surgeon to discuss getting a fundoplication procedure. I had another test, this time an esophogram with a barium swallow. Hopefully, this will give them a better idea of whether or not I'm a good candidate for this type of surgery. If not, then it's plan B.

Author:  Libertas [ Wed Dec 21, 2016 2:03 pm ]
Post subject:  Re: I Have Laryngotracheal Stenosis

I'm taking another trip to Boston this morning. This time it's for an office visit with a bariatric surgeon to discuss getting a fundoplication procedure. I had another test, this time an esophogram with a barium swallow. Hopefully, this will give them a better idea of whether or not I'm a good candidate for this type of surgery. If not, then it's plan B.

Good luck.

I found a good way to lose weight, after my 2nd heart attack my doctor said lower your fat and salt intake or die.

I wasnt eating salt per se but saturated fat, yes. I was 6'0" and 185 at the time, I am now 6'7" and 165 lbs with total cholesterol around 130 with hdl around 70, and I take statins.


:lol: The real trick is getting taller, I am good at that.

Author:  RitaAnn [ Thu Dec 22, 2016 4:12 pm ]
Post subject:  Re: I Have Laryngotracheal Stenosis

Bad news. I'm not a good candidate for the procedure I want. The pH test and motility test confirmed it. Why they wanted the barium swallow is beyond me. Someone got extra money in their pockets.

Anyway, the only viable solution for the acid reflux is a gastric bypass with surgery for the hernia. The reason is to prevent the acid from aspirating into my windpipe. My BMI is still too much for a successful hernia surgery now.

The other bad news, in addition to the drastic surgery, is the numerous preliminary visits with nutritionists and counselors. If I could do it all in Maine that would be great, but there's this small matter of the trachea stenosis that needs monitoring by a specialist, a specialist that is found in Boston.

So now it's Plan B. Hopefully the bariatric surgeon I saw yesterday can work something out with the specialist in Lewiston. Maybe I can get the surgery done here, but the big question is will they operate without the thoracic surgeon being present.

Author:  Libertas [ Thu Dec 22, 2016 5:04 pm ]
Post subject:  Re: I Have Laryngotracheal Stenosis

Bad news. I'm not a good candidate for the procedure I want. The pH test and motility test confirmed it. Why they wanted the barium swallow is beyond me. Someone got extra money in their pockets.

Anyway, the only viable solution for the acid reflux is a gastric bypass with surgery for the hernia. The reason is to prevent the acid from aspirating into my windpipe. My BMI is still too much for a successful hernia surgery now.

The other bad news, in addition to the drastic surgery, is the numerous preliminary visits with nutritionists and counselors. If I could do it all in Maine that would be great, but there's this small matter of the trachea stenosis that needs monitoring by a specialist, a specialist that is found in Boston.

So now it's Plan B. Hopefully the bariatric surgeon I saw yesterday can work something out with the specialist in Lewiston. Maybe I can get the surgery done here, but the big question is will they operate without the thoracic surgeon being present.

What is the cause of this if you know? The cause of the condition?

Author:  RitaAnn [ Thu Dec 22, 2016 6:03 pm ]
Post subject:  Re: I Have Laryngotracheal Stenosis

What is the cause of this if you know? The cause of the condition?


They believe it's the acid reflux that has caused the trachea stenosis. This is why they want the acid in check before doing the surgery on the trachea.

Author:  Libertas [ Thu Dec 22, 2016 6:05 pm ]
Post subject:  Re: I Have Laryngotracheal Stenosis


They believe it's the acid reflux that has caused the trachea stenosis. This is why they want the acid in check before doing the surgery on the trachea.

What do they think contributed to you having acid reflux to this degree that would cause this?

Diet or anything else?

I am curious for personal reasons.

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