Has anyone beat the mucous problem with trachs?

George_Baltimore

I am at my wits end. I was diagnosed and treated (chemo & radiation) for squamous cell carcinoma in the base of my tongue. I am thankful that I am still in remission but the radiation just keeps on giving. On the recommendation of my doctors, I had all my teeth pulled before beginning radiation to prevent bone necrosis. Didn't work. Around January of last year, my gum started opening up showing my bare mandible on the left side. The opening kept getting bigger and bigger so I consulted a head and neck cancer surgeon. After explaining my options, I decided to go with removing part of the jawbone and replacing it with a part of my tibia from the leg. That operation was done in June of last year. They put in a temporary tracheostomy. They removed it before I was discharged from the hospital.

I have suffered from chronic sinus infections for a good while. I was getting a lot of green mucous up from my lungs that I coughed out my trach opening. Both my regular ENT and my surgeons said that was natural for a trach. As the trach opening closed up, it became harder and harder to get the mucous out of the hole. Every once in awhile, I was able to get it out my mouth. That's another problem because I have an esophageal stricture that I have to have dilated once a month to keep it open. I can't swallow right now. I'm hoping that's because I wasn't dilated for about six months last year because of the surgeries.

I ended up having to have the trach put back in sort of as an emergency because I could barely breatheo all of a sudden one day. They didn't want to put me under so they did it while I was fully awake. I NEVER want to got through that again! It was good that they put it back in because shortly after, we discovered that the bone graft didn't take. They had to operate again to take the bone out. About a month or so after that, they had to operate again because the screw for the titanium plate was coming loose.

So now, what I am left with is part of my right jawbone swinging in the wind, a face that looks like it should be in a circus freak show, and a trach that is still in. Noe that you have some background and have allowed me to get out some of my frustration, has anyone had a thick mucous problem and handled it successfully? I want this trach out so bad but I don't want to have to have it put back in again in an emergency.

I've tried Salagen and Mucinex (to thin it), an antibiotic and antifungal to get rid of it but nothing has worked. Does anyone have any suggestions? Even if you don't, thanks for listening.

longtermsurvivor

Thinning that mucous has been discussed
I'll try to find the thread as it's not too old. Sounds like you've really been through it. In the meantime, here's something I just happened to be reading before I pulled up your post. It doesn't have application for you today, but maybe it will tomorrow.

http://www.bbc.co.uk/news/technology-16907104

BTW, did you have HBO before the mandible operation?


Pat

fisrpotpe

try
try over the counter saline solution. i would tip my head back and spray enough in each side of my nose until i felt it running down my throat. it would loosen up both my nose and the back of my throat and that would help me blow it out my nose and hack out the back of my throat. i would do it as often as i had too. slowly and slowly mucous/phlegm months down the road it did get better and i stopped using the saline. Ocean is the brand i used and got it at walgreens.

btw i have had a trach for 3 1/2 years, it is now part of my new normal and it helps me with getting air to my lungs.

good luck

john

longtermsurvivor

longtermsurvivor said:

Thinning that mucous has been discussed
I'll try to find the thread as it's not too old. Sounds like you've really been through it. In the meantime, here's something I just happened to be reading before I pulled up your post. It doesn't have application for you today, but maybe it will tomorrow.

http://www.bbc.co.uk/news/technology-16907104

BTW, did you have HBO before the mandible operation?


Pat

mucous threads
I tried to copy and paste the threads that dealt with mucous, but that effort failed. If you'll, browse through the first maybe 8 pages of posts a read headings, there are maybe 7-8 threads with mucous in the title. I figure that might represent the total knowledge of the board. Don't know if it will be helpful.

Pat

George_Baltimore

longtermsurvivor said:

Thinning that mucous has been discussed
I'll try to find the thread as it's not too old. Sounds like you've really been through it. In the meantime, here's something I just happened to be reading before I pulled up your post. It doesn't have application for you today, but maybe it will tomorrow.

http://www.bbc.co.uk/news/technology-16907104

BTW, did you have HBO before the mandible operation?


Pat

Thanks Pat. That was a very
Thanks Pat. That was a very interesting article. The technology just keeps getting better and better. Unfortunately, it doesn't help those who had their diagnoses years ago. I forgot to mention my original diagnosis and treatment was back in 2004. I did have some HBO treatments right after the mandible operation. I also had a total of 120 treatments a year or two before the surgery to see if it would help the rawness of my throat which it did a little.

George_Baltimore

fisrpotpe said:

try
try over the counter saline solution. i would tip my head back and spray enough in each side of my nose until i felt it running down my throat. it would loosen up both my nose and the back of my throat and that would help me blow it out my nose and hack out the back of my throat. i would do it as often as i had too. slowly and slowly mucous/phlegm months down the road it did get better and i stopped using the saline. Ocean is the brand i used and got it at walgreens.

btw i have had a trach for 3 1/2 years, it is now part of my new normal and it helps me with getting air to my lungs.

good luck

john

try
Believe it or not, I have tried your method with Ocean Spray a couple times when I could feel something in the back of my nose leading to my throat. It helped temporarily as did my sinus rinse procedure. I usually have no problem coughing up the mucous and expelling it out of my trach. My problem is it won't go away enough for me to feel comfortable in telling my doctor to take it out.

At my last swallowing and speech therapy session, we capped off my trach for the hour. My therapist measured my oxygen saturation four times during the hour. Each time it was 100%. I have no problem breathing with it capped off. It's just when I cough that it seems to stick at the trach site rather than continuing up. Some of that could be due to the trach tube still being in place but my therapist said that the mucous should still be able to go around it.

longtermsurvivor

George_Baltimore said:

try
Believe it or not, I have tried your method with Ocean Spray a couple times when I could feel something in the back of my nose leading to my throat. It helped temporarily as did my sinus rinse procedure. I usually have no problem coughing up the mucous and expelling it out of my trach. My problem is it won't go away enough for me to feel comfortable in telling my doctor to take it out.

At my last swallowing and speech therapy session, we capped off my trach for the hour. My therapist measured my oxygen saturation four times during the hour. Each time it was 100%. I have no problem breathing with it capped off. It's just when I cough that it seems to stick at the trach site rather than continuing up. Some of that could be due to the trach tube still being in place but my therapist said that the mucous should still be able to go around it.

George
I'm not as convinced as your therapist that mucous should always go around. You might want to revisit that question again. You also might want to consider capping off for a longer period of time under "overservational status" so you don't get into a panic situation if things don't go your way. Just spitballing here, sorry if none of this is appropriate.

pat

George_Baltimore

longtermsurvivor said:

George
I'm not as convinced as your therapist that mucous should always go around. You might want to revisit that question again. You also might want to consider capping off for a longer period of time under "overservational status" so you don't get into a panic situation if things don't go your way. Just spitballing here, sorry if none of this is appropriate.

pat

George
Hi Pat, that's exactly what I plan on doing. It just seems like a Catch-22 situation. I can't really determine whether the mucous will come all the up and out my mouth with the trach tube in but if I have it taken out, I might be in the same fix that happened before when they took it out. Sigh! Does anyone have a crystal ball? I didn't have problems until the trach hole was almost completely closed because I could always take the dressing off and get the mucous out of the hole.

longtermsurvivor

George_Baltimore said:

George
Hi Pat, that's exactly what I plan on doing. It just seems like a Catch-22 situation. I can't really determine whether the mucous will come all the up and out my mouth with the trach tube in but if I have it taken out, I might be in the same fix that happened before when they took it out. Sigh! Does anyone have a crystal ball? I didn't have problems until the trach hole was almost completely closed because I could always take the dressing off and get the mucous out of the hole.

Here's a dumb thought
I had an experience with my own trache, while stillin the hospital, that demonstrated they don't know everything about these things. In my case, my guesswork was way better than the RT who was trying to goof up my care. Enough said.

Have you considered this: the ENT oncologist on your case is the leading expert by far. He will know way more about all aspects of this than the other doctors do, or the paraprofessionals who are on your treatment team. Yet likely most of your office time has been spent in his office dealing with the life-threatening issues, like your cancer, graft rejection, etc. You could schedule an entirely separate appointment to discuss just these other things. Things that aren't that important to anyone but you,like how to optimize your chances of getting past the trache. I'd do that by separate office appointment, made at a time other than my routine follow up. And I'd have an agenda, in writing, that I could refer to. I'd make certain that the doctor, at least by written and verbal communication to his nurse, knew what I needed to accomplish on that visit. Then I'd sail into my list and see what my expert could do to help me.

I've found this to work pretty well for resolving some of these other problems. I even did this regarding help with my disability situation, etc. After all, when I'm paying for the visit, its my time.

Yeah, I wish I had a crystal ball. Or maybe not, my future isn't as secure as some.


Best to you.

longtermsurvivor

George_Baltimore said:

George
Hi Pat, that's exactly what I plan on doing. It just seems like a Catch-22 situation. I can't really determine whether the mucous will come all the up and out my mouth with the trach tube in but if I have it taken out, I might be in the same fix that happened before when they took it out. Sigh! Does anyone have a crystal ball? I didn't have problems until the trach hole was almost completely closed because I could always take the dressing off and get the mucous out of the hole.

Here's a dumb thought
duplicate

George_Baltimore

longtermsurvivor said:

Here's a dumb thought
I had an experience with my own trache, while stillin the hospital, that demonstrated they don't know everything about these things. In my case, my guesswork was way better than the RT who was trying to goof up my care. Enough said.

Have you considered this: the ENT oncologist on your case is the leading expert by far. He will know way more about all aspects of this than the other doctors do, or the paraprofessionals who are on your treatment team. Yet likely most of your office time has been spent in his office dealing with the life-threatening issues, like your cancer, graft rejection, etc. You could schedule an entirely separate appointment to discuss just these other things. Things that aren't that important to anyone but you,like how to optimize your chances of getting past the trache. I'd do that by separate office appointment, made at a time other than my routine follow up. And I'd have an agenda, in writing, that I could refer to. I'd make certain that the doctor, at least by written and verbal communication to his nurse, knew what I needed to accomplish on that visit. Then I'd sail into my list and see what my expert could do to help me.

I've found this to work pretty well for resolving some of these other problems. I even did this regarding help with my disability situation, etc. After all, when I'm paying for the visit, its my time.

Yeah, I wish I had a crystal ball. Or maybe not, my future isn't as secure as some.


Best to you.

Here's a dumb thought
Hi, long term. It's not a dumb thought but I have constantly asked my surgical ENT, my regular ENT and my mandible reconstructionist about the mucous and they have all said the same thing. They say it's natural to have all that green mucous at a trach site. All three have prescribed antibiotics to try to get rid of it and nothing has worked. My regular ENT cultured it and prescribed Cephalexin. He said that should take care of what was reported that I had in there. Naturally, it hasn't. Before the surgery, I had this same trouble trying to get rid of different sinus infections.

It's like beating my head up against a brick wall. It is so darned frustrating. When I started my swallow/speech therapy, I said something to her about it. She is a part of the group of surgical specialists. She said it was normal unless I was having to clear my cannula more than once an hour or so. I said I wish that was all I had to clear it. There are many, many times where I no sooner get it cleaned and back in than I have to take it right back out to clean it out again. I think they all thought I was exaggerating. She found out quickly that I wasn't. She said, "I see what you mean now," after it kept happening during that first session.

So, even though you had a good thought, I know how it would turn out already. Sometimes I just want to shake them and say, "Did you hear what I said? I'm not exaggerating!"

longtermsurvivor

George_Baltimore said:

Here's a dumb thought
Hi, long term. It's not a dumb thought but I have constantly asked my surgical ENT, my regular ENT and my mandible reconstructionist about the mucous and they have all said the same thing. They say it's natural to have all that green mucous at a trach site. All three have prescribed antibiotics to try to get rid of it and nothing has worked. My regular ENT cultured it and prescribed Cephalexin. He said that should take care of what was reported that I had in there. Naturally, it hasn't. Before the surgery, I had this same trouble trying to get rid of different sinus infections.

It's like beating my head up against a brick wall. It is so darned frustrating. When I started my swallow/speech therapy, I said something to her about it. She is a part of the group of surgical specialists. She said it was normal unless I was having to clear my cannula more than once an hour or so. I said I wish that was all I had to clear it. There are many, many times where I no sooner get it cleaned and back in than I have to take it right back out to clean it out again. I think they all thought I was exaggerating. She found out quickly that I wasn't. She said, "I see what you mean now," after it kept happening during that first session.

So, even though you had a good thought, I know how it would turn out already. Sometimes I just want to shake them and say, "Did you hear what I said? I'm not exaggerating!"

Dang
Then I only have one other thought, worth about what uyou are paying for it. If you've exhausted your possible avenues with this team, and if youre convinced they either cannot or just will not provide you relief you seem to be left with only two choices.
1) Decide that you're as good as you're gonna be.
2) Decide its worth overturning another rock or two to see whether a new perspective might solve any of these problems, or at least ameliorate them for you.It

If number 2, its time to look for another team, telling them in advance that the appointment(s) are because of your quality of life issues following these treatment problems, and to focus them at the start on QOL rather than your past cancer. FWIW, I know which one of these choices I would take. Life is short, and although I'm prepared for whatever sacrifice I dived into at the start of my several treatments, I'm personally not going to concede any of the issues that might give me a little better breathing room.

I'm sorry I don't have any better ideas for you George.

Pat

George_Baltimore

longtermsurvivor said:

Dang
Then I only have one other thought, worth about what uyou are paying for it. If you've exhausted your possible avenues with this team, and if youre convinced they either cannot or just will not provide you relief you seem to be left with only two choices.
1) Decide that you're as good as you're gonna be.
2) Decide its worth overturning another rock or two to see whether a new perspective might solve any of these problems, or at least ameliorate them for you.It

If number 2, its time to look for another team, telling them in advance that the appointment(s) are because of your quality of life issues following these treatment problems, and to focus them at the start on QOL rather than your past cancer. FWIW, I know which one of these choices I would take. Life is short, and although I'm prepared for whatever sacrifice I dived into at the start of my several treatments, I'm personally not going to concede any of the issues that might give me a little better breathing room.

I'm sorry I don't have any better ideas for you George.

Pat

dang
Pat, I do appreciate your input. A couple days ago, I spent a couple hours researching the mucous problem on the web. I came up with a drug called Acetylcysteine. It's a mucolytic agent to be used in a nebulizer. I've been using guaifenesin (Mucinex, Tussin, etc.) but can see no difference. I figure with something you inhale and get it directly on the mucous, it should work better than something that goes through the blood stream. I'm keeping my fingers crossed.