Scar tissue aspiration- any way to avoid feeding tube?

Logan51

Help! ENT Dr. scoped my throat due to my swallowing test reults. Said he sees a lot of scar tissue, and attributes that to the aspiration.

Anybody know of a way to eliminate the scar tissue impediment? Laser, for instance?

I had a feeding tube and used exclusively for 10-11 weeks in tx, and kept for 17 months; however, the thought of one for life...AND, what happens to the esophagus? Plan on keep swallowing water, and taking pills that way- but will that be enough to keep esophagus okay?

The good news, though- ENT found no suspicious growths.

Any info to the positive would be very welcome. Almost 65, now, this development 10-plus years out to the good has got me in a dark frame of mind.

wbcgaruss

Dave I'm with Ya on This

as I thought about it many times (being on a feeding tube permanently) especially during recovery but never had to face it like you are going through. It sounds like you are still able to swallow something and you plan on at least water and pills. Glad your ENT found no suspicious growths. Dave get away from the dark frame of mind. Many good things going on and even on the tube you may improve later or a new procedure may come along. I don't have any suggestions that would help except that if you haven't already get hooked up with a teaching hospital I have read of folks on here that have found answers there when they could not anywhere else. Prayers your way-God Bless

Logan51

wbcgaruss said:

Dave I'm with Ya on This

as I thought about it many times (being on a feeding tube permanently) especially during recovery but never had to face it like you are going through. It sounds like you are still able to swallow something and you plan on at least water and pills. Glad your ENT found no suspicious growths. Dave get away from the dark frame of mind. Many good things going on and even on the tube you may improve later or a new procedure may come along. I don't have any suggestions that would help except that if you haven't already get hooked up with a teaching hospital I have read of folks on here that have found answers there when they could not anywhere else. Prayers your way-God Bless

wbc

Thank you for responding. My problem is I'm stuck on Medicaid for the next 4+ months, and options are few as to the Insurance will let me see. Am going to Speech Therapist this Monday. Waiting now on Lung X-ray results, and digestive system still functions- so going to wait awhile longer.

Suez39

Had the same question

Dave I had treatments for base of the tongue & tonsil cancer. I finished my treatments and I'm a little over a year out. I'm on a feeding tube and have trouble swallowing because of build up scar tissue. I asked my ENT doctor if they could remove the scar tissue. He said no because that would create more problems. New scar tissue would form and also added swelling would develop.  Hopefully you won't have difficulty breathing like me. The structures  in your throat sometimes fail to work properly and the scar tissue can narrow your airway depending on your situation. I hope this helps you. My ENT is the director of all the doctors at my hospital. So he's very knowledgeable. Try to not have a dark frame of mind. I've been very discouraged myself cause they said I might need a trach put in my neck. I'm 61 but look 45. Lol ( That's what my friends say!)  Keep posting and let us know how your doing. I wish you the best of luck.

Logan51

Suez39 said:

Had the same question

Dave I had treatments for base of the tongue & tonsil cancer. I finished my treatments and I'm a little over a year out. I'm on a feeding tube and have trouble swallowing because of build up scar tissue. I asked my ENT doctor if they could remove the scar tissue. He said no because that would create more problems. New scar tissue would form and also added swelling would develop.  Hopefully you won't have difficulty breathing like me. The structures  in your throat sometimes fail to work properly and the scar tissue can narrow your airway depending on your situation. I hope this helps you. My ENT is the director of all the doctors at my hospital. So he's very knowledgeable. Try to not have a dark frame of mind. I've been very discouraged myself cause they said I might need a trach put in my neck. I'm 61 but look 45. Lol ( That's what my friends say!)  Keep posting and let us know how your doing. I wish you the best of luck.

Suez39

Though I don't care much for what your ENT told you, I am very appreciative of the info/knowledge you have provided me. Very much so. Have my regular Dr. appointment this PM and plan to give the go-ahead for a FT. Have been eating thin pizzas, and last night bronchial coughs showed me the pasta was getting into my windpipe. Mama Mia!!!

I thank you again, Suez39. I think of the Beatles' song "When I'm 64..." I'm still 64, and now this, oh boy...And, I do wish you the best of luck in your struggles with the "new normal," Suez. I'm 10+ years out, and you're dealing with a lot more than I ever had to. My Prayers are with you.

SuzJ

eating

You have to think of food and it's "clumpability factor"

 

Right?

Ok, small explanation as I have a long, long day tomorrow.

Think of Rice, it tends to form clumps. If some gets stuck going the wrong way, it'll attract more, it gets stuck to itself. Thats a bad food..

Spaghetti is ok, in small bits, with lots of sauce to make it slippery.

My favorite of all time - salad, clumps insanely, I feel like lettuce is strangling my vocal chords.

My speech therapis taught me all this, I get blank looks from Drs and Nutitionists if I mention Clumpability, but think on it, its real. Think of what foods get stuck - those you cant have without a gallon of water.

Logan51

SuzJ said:

eating

You have to think of food and it's "clumpability factor"

 

Right?

Ok, small explanation as I have a long, long day tomorrow.

Think of Rice, it tends to form clumps. If some gets stuck going the wrong way, it'll attract more, it gets stuck to itself. Thats a bad food..

Spaghetti is ok, in small bits, with lots of sauce to make it slippery.

My favorite of all time - salad, clumps insanely, I feel like lettuce is strangling my vocal chords.

My speech therapis taught me all this, I get blank looks from Drs and Nutitionists if I mention Clumpability, but think on it, its real. Think of what foods get stuck - those you cant have without a gallon of water.

SuzJ

SuzJ

Thank you. Have my first Speech Therapist appointment next Monday...while still waiting to hear from the Surgery Center to just meet with a local Surgeon. Meanwhile, I continue losing weight: am now wearing the same size pants I did when I was in treatment! In fact, I went shopping yesterday and bought three blue jeans @ waist sizes 30 and 31- was a 33. 

I chew my single bread and cheese and meat sandwiches thoroughly. The pizza strips also. Not sure if what I am swallowing are small clumps. Do have to use sips of water in place of the saliva I no longer have, and cough after every two swallows- typically seeing evidence of the food. My GP did warn me about the risk of choking, so I swallow small amounts at a time- then cough.

Logan51

Update

Met w/Speech Therapist on Monday. She was adamant about keeping the swallowing function going- even w/FT. Thinks she will be able to help with stretching exercises. Says in 7 or so weeks will have me go thru another swallowing test.

I still eat very solid food, like pizza and breakfast rolls. And, have learned the best way to swallow pills: feel them on the center of my tongue w/water in my mouth, then jerk my head back and swallow. Do have to cut most pills in half, though.

Meet w/Surgeon this morning about getting the FT...Have accepted that it is inevitable. 8-9 years out to the good when the aspiration was first noticed. The positive news for everybody is that my situation may not apply to the majority of Survivors- 5600 cGys was the plan in 20 places for the unknown Primary NPC, and ended up getting 6800. The Rad Dr. even had my ENT do an Eleventh hour second biopsy trying to find a Primary to focus on, which he didn't, so the Rad Dr. did know about the potential repercussions. Rad Technician even told me after my last session that what I had gone thru was as extreme as anyone they treat gets. So, they did an overkill on the Rads, perhaps. I hope the vast majority of you do not face what I am down the road.

wbcgaruss

Logan51 said:

Update

Met w/Speech Therapist on Monday. She was adamant about keeping the swallowing function going- even w/FT. Thinks she will be able to help with stretching exercises. Says in 7 or so weeks will have me go thru another swallowing test.

I still eat very solid food, like pizza and breakfast rolls. And, have learned the best way to swallow pills: feel them on the center of my tongue w/water in my mouth, then jerk my head back and swallow. Do have to cut most pills in half, though.

Meet w/Surgeon this morning about getting the FT...Have accepted that it is inevitable. 8-9 years out to the good when the aspiration was first noticed. The positive news for everybody is that my situation may not apply to the majority of Survivors- 5600 cGys was the plan in 20 places for the unknown Primary NPC, and ended up getting 6800. The Rad Dr. even had my ENT do an Eleventh hour second biopsy trying to find a Primary to focus on, which he didn't, so the Rad Dr. did know about the potential repercussions. Rad Technician even told me after my last session that what I had gone thru was as extreme as anyone they treat gets. So, they did an overkill on the Rads, perhaps. I hope the vast majority of you do not face what I am down the road.

Thanks for the Update

Dave. Hang in there and keep swallowing and eating, carefully of course. Sounds like you have a great speech therapist that is really pulling for you and wants to keep you going as normal as possible no ifs and's or buts. Good to have positive people on your side. I take awhile to eat and I guess you do too. Even though I had dilations I still have to make sure I chew well and drink with drier foods and can't take shortcuts. I take my pills very similar to you also and have one pill that works best if cut in half. Hang tough, I'm pullin for ya -You're in my Prayers-Take care, Dave.