Post IMRT for BOT SCC. ASPIRATION PNEUMONIA

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Post IMRT for BOT SCC. ASPIRATION PNEUMONIA

by Janey6 on Thu Sep 20, 2018 05:47 PM

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Seven years out......and now need PEG tube. Fibrosis, bulky epiglottis, laryngeal folds won’t close. Swallow eval x 3. Exercises, Vital Stim, and holy water....no help. Saw micro vascular ENT who has had some success restoring swallowing ability.....can’t help us. There isn’t a stricture.......just lots of fried tissue. Anybody have same problem? Is there any way to reconstruct some of the damage from IMRT? Janey

RE: Post IMRT for BOT SCC. ASPIRATION PNEUMONIA

by Sdurnell on Fri Sep 21, 2018 01:14 AM

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Janey,

Sorry about those "late radiation effects."  So far only my voice has been affected, but I know that my swallow could disappear at any time as well.  Radiation is truly the gift that keeps on giving.  I figure that I was on the tube for a year the first time, so I can do it again if I have to.  I hope you find something that can help you so you don't have to.

All the best, 

Susan

RE: Post IMRT for BOT SCC. ASPIRATION PNEUMONIA

by norbflo on Fri Sep 21, 2018 10:23 PM

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I am 8 yrs out and have extensive radiaton scarring and constant aspiration. Swallowing is maintained by esophageal dilations 2 times a year. It took me 11/2 years to get off stomach tube. I'm eating "normal" as long as my lungs hold out. I have found no way to correct the swallowing problem save the inevitable J-tube.    Norb

RE: Post IMRT for BOT SCC. ASPIRATION PNEUMONIA

by Sdurnell on Sun Sep 23, 2018 04:52 AM

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Dilations work for me as well.  I have not had aspiration pneumonia since I started getting them, usually several a year, but the next-to-last one was good for 13 months, and I'm almost 7 months out this time and doing well.  Who would think things would approve at teh nearly 8-year mark?

Susan

RE: Post IMRT for BOT SCC. ASPIRATION PNEUMONIA

by Janey6 on Sun Sep 23, 2018 03:26 PM

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On Sep 21, 2018 10:23 PM norbflo wrote:

I am 8 yrs out and have extensive radiaton scarring and constant aspiration. Swallowing is maintained by esophageal dilations 2 times a year. It took me 11/2 years to get off stomach tube. I'm eating "normal" as long as my lungs hold out. I have found no way to correct the swallowing problem save the inevitable J-tube.    Norb

Norbert, Did you have a stricture? I’m told that BOT lesion has worse RT damage to swallowing mechanisms. No one says stricture so I guess nothing to dilate? Janey

RE: Post IMRT for BOT SCC. ASPIRATION PNEUMONIA

by Loves2Fly on Sat Sep 29, 2018 07:58 PM

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You are not alone. My husband is 3 1/2 years out and has been and will permanently be on a PEG tube.Tests , PT, stim, multiple doctor opinions, you name it, we tried it. He is just recovering (2 months out) from severe aspiration pneumonia from regurgitation.  

RE: Post IMRT for BOT SCC. ASPIRATION PNEUMONIA

by Loves2Fly on Sat Sep 29, 2018 08:19 PM

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Swallowing issues are caused by many different things. Swallowing is actually quite complex, and we don’t even think about it until it isn’t working right. what will work depends on what is causing the issues.

There are some 25 sets of muscles just within the throat base, esophagus, trach and vocal cords alone! Extensive damage to any or all of these can develop a very wide variety of issues.

1)    Loss of the nerve sensitivity that triggers “the swallow”. This also often happens to stroke patients. Finding ways to trigger the swallow mechanism can help. Usually this is in where food or drink is placed on the tongue, no distractions, and even sitting posture can help. There are specially designed spoons and cups that can help with food placement. Even certain types of water bottles can make the water hit “the right spot” and make swallowing function better. This nerve sensitivity is what causes us to "gag" when we get a hair in our mouth!

2)    Loss of muscle. Again, stroke patients also have this issue. Improvements can be made (depending on amount) by certain exercises of tongue, jaw, and even neck muscles. Some have good results with acupuncture and massage as well.

3)    Loss of tissue. When tumors are removed, there is a loss of tissue, which can result in not enough -say tongue - to move food where it needs to go. The tissue/ muscle is physically gone, so the only way to deal with this is to find different ways of swallowing, such as trying with certain consistencies of food or adding ingredients so it “slides” better (butter or water, usually).

4)    Constrictions. This is usually like having a rubber band around a place in the tube. Dilations work well with this, as it can “break the rubber band”.

5)    Cobwebs. This is when scar tissue develops like a thin web across the esophagus. Dilations can break through this web and open up to swallow.

6)    Overall scarring. When the esophagus itself has large amounts of scarring, the esophagus itself can’t move the food along. It is a muscular tube and if it is too scarred, the muscle can’t do it’s job. The food simply doesn’t move down to the stomach, and seems to get “caught” in the throat. Depending on scarring, it might be possible for the food to move to a less scarred spot, and still allow for a swallow, although a bit more difficult.

7)    Scarring and Aspiration. If there is scarring, this also isn’t felt until the food is quite a way down. For normal swallow, we feel it at the top, cough, and it comes up (“went down the wrong pipe”). For those with radiation scarring, it might not be felt until it is at the lower branches going into each lung. The left lung has a branch that is almost 90 degrees from traches, but the right goes almost straight down. If food or drink get that far, it is very difficult to cough up. Any food (in solid or liquid) in the lungs can cause bacteria to grow, resulting in aspiration pneumonia. Even “chewing and spitting” can result in bacterial in the lungs, when water washing it down in a swallow is aspirated.

8)    Epiglottis issues. The epiglottis is the little flap that closes to keep food our of trachea and therefore, out of the lungs. The epiglottis is cartilage, and radiation can turn cartilage to fiber. Radiation can also change the size and shape of the epiglottis. When this doesn’t close, food and drink go into the lungs instead of the stomach. If the issue is only the muscle movement of the epiglottis, physical therapy can strengthen the muscles that move epiglottis, but in other cases, it doesn’t work at all. 

9)    Necrosis. Scarring causing loss of blood flow to tissue, resulting in tissue dying, which, if you can get it to heal can mean more scarring. HBOT (Hyberbaric Oyxgen Therapy) can help, but is often not covered by insurance. Worth fighting for it if you can, if you have necrosis, tho. After several battles, we were able to get 60 “dives” covered, which completely healed the area for my husband. 

So, why not surgery to remove scarring, or repair epiglottis, or graft tissue on? Sometimes it is possible, but very often, there is not a lot of blood flow to this area after radiation, and it has a high probability of not healing, or even more scar tissue to develop.

Dilations can work, but only if the problem is one of a few, of a wide variety of issues. They are very good in those cases, but don’t and can’t work in every type of issue. Physical Therapy can work, Reconstruction can work, Electrical stimulus can work, acupuncture can work, but again, it completely depends on what the issue is, and how severe it is. Sometimes scarring starts slow and then accelerates, sometimes it slows down, sometimes there is a pause. It is very individual based on a lot of factors.

Radiation is “the gift that keeps on giving” and effects continue the rest of your life (think half life of radiation). To what extent depends on how your body reacts (why do some scar heavily and others not), how much radiation you received, what type of radiation, what type of delivery, and location or locations on body. Getting in multiple areas, and/or both sides is going to give more issues than a small dose in one small spot.

Different doctors have different methods, as well as different methods depending on patient individual factors. Doctor may choose one type, etc., if only one spot on tongue or in throat is involved, and a completely different way if lymph nodes are also involved. If it is a tumor, plus mass, plus multiple lymph nodes on both sides, still another might be used. There is not a one size fits all, and perhaps that is a good thing.

While a PEG tube isn’t ideal, it can offer full nutrition and necessary calories quickly and easily. Having one permanently does change your life as well as family life. We don’t realize how much meals are a part of our social structure. Having to take with you everything you need to “eat” for trips is sometimes difficult and overwhelming. Getting through various airport security is a real adventure. But, with some planning, it can be done!

Aspiration pneumonia is a very real issue for people with swallowing issues. It differs from regular pneumonia as it is bacterial, not viral. Bacteria enters the lungs during aspiration. Most often, this bacteria is from food during swallowing, but can come from regurgitation or even vomiting. Some with swallowing issues will take food by mouth for taste, spit it out, and then rinse. This does not really protect them from aspiration pneumonia, as the water they rinse and swallow with may have small food bits or liquid and be aspirated. This is why people are told not to eat before surgery, as they might aspirate stomach contents. During aspiration, small pieces of food enter the lungs and “rot” there. This can quickly go to abscess, where the lung is deeply infected, and some lung tissue can be lost. This infection can then move into the blood stream and ultimately cause sepsis. Keeping a healthy mouth (ie. dental issues) is important, as bacteria can develop in the mouth, particularly with limited saliva.

Getting a PEG tube, when needed, and while not ideal, can mean a more active life. A meal with right nutrition and calories can be taken in a short time, and good health maintained.

RE: Post IMRT for BOT SCC. ASPIRATION PNEUMONIA

by Sdurnell on Sun Sep 30, 2018 02:41 AM

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This is a very good summary of swallowing problems.

Just a bit more here on being tube fed.  I could not swallow at all for most of the year following my treatment, so was on the tube for everything--hydration, medication, nutrition.  It turned out to have nothing to do with my swallow, but instead was caused by a complete stricture, something my ENT had never seen so did not anticipate.

He could not open it, but found me a great GI who eventually was able to.  Unlike most people on G-tubes, I was never able to bolus feed (the kinds of quick, easy feeds Loves2Fly mentions).  Instead I relied at first on a feed bag with a pump on a pole, and later on one within a backpack, which was much more convenient and completely portable.  My feeds took much longer than a bolus feed does.

For a while I believed that my inability to eat by mouth would be permanent, and I came to terms with it.  I took a 3-week trip with my family that involved flying one way across the country and driving 3000 miles back.  It was very doable, and not all that inconvenient; by that time I had the backpack pump.  We shipped bags and formula ahead, checked some on the plane, and I carried some on.  They didn't hassle me very much, but I did have to open, and thus waste, one can of formula.

About the only thing I couldn't do well with my backpack pump was drive, but there were ways to rig it up if I needed to feed while driving.  I even wore it while teaching--the kids were very interested.

I am 8 years out this fall, and I now realize that at some point my swallow may fail me once again.  But I now know it's OK, that I can survive just fine with a tube if need be.

All the best to you,

Susan

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