Dang the Rad damage

Logan51

NPC w/concurrent C&R, 68 Gys to bottom half of throat, 60 to top half, and 56 above the chin back in early 2009.

First came the aspiration and discovery of Rad damage to the esophagus as the cause, and have been FT-dependent since 8/2019.

Car accident just before my 14th Birthday= crushed windpipe @ larynx got me 23 Ops. over 26 months and a half-paralyzed larynx protruding into my air passage, and the grafting of a silicone stint just below my voice box was part of the Op. 22 final solution...NOW, starting in 2016 I noticed mowing my west-40 45x96' lot was getting more difficult, as in getting winded, and in early 2019 bought a Condo unit because of the mowing (and basement of house condition).

Year and a half ago I got scoped by an ENT I didn't have much respect for, and he said I needed to get out to the U of Iowa Hospital because of how small my air passage is. I saw the video and was shocked, because the functioning half was also protruding and larynx flap itself barely moving. This Wednesday I went to MY ENT, he did a scoping and got very close to the opening. In his words, I have "at best a quarter the size of a normal air passage." He thought all the tissue looked good, and concluded it has to be scar tissue from Radiation, laser clearing is only a temporary fix and no guarantees it would not make worse. His conclusion: "You're the one who will be able to best tell when you need a tracheostomy."

So, not only FT-dependent, but (like a few others on the Forum over the years) also trachea tube-dependent just to breathe. Nasopharyngeal, unknown Primary, so the Local Loco Rad Dr. applied the most to the base of my throat, which makes her Loco, and now the car accident back in 1968 has teamed-up with the Rad damage from early-2009 to bring this predicament to me...Years ago Hondo let me know about a man who went thru my C&R regiment some 20 years prior. He spent 8 weeks in a Hospital during tx, and 20 years later, in a message to me, he said it was not worth it. I could not understand how he could think that, but now am getting a better understanding...Even if I am FT and trachea tube dependent in the near future, for all that I've lived to experience over the last 13+ years: Yes, it was worth it to me.

Still alive, and I reckon that is the bottom line.

wbcgaruss

Logan, I know you have talked about this a little from time to time but I think what you are saying is you are having increasing trouble with breathing and are considering the possibility of needing to get a trach. Sorry, you are in this position and I hope till it's all said and done you can somehow avoid this. I know you are H&N smart about cancer and the effects of treatment so I assume you have checked all avenues of possible solutions. Thanks for the update Take care, Logan.

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Logan51

I went thru the video of my scoping frame by frame, and this is my air passage @ the larynx when breathing...oh boy

wbcgaruss

Logan, so sorry you are in the situation with this radiation damage. Unfortunately, it is irreversible and many of us have something we are dealing with every day because of it. It seems you were especially hard hit and affected by it though. I am also dealing with a situation because of radiation, although it did not become as pronounced until my last cancer situation and second follow-up radiation. I don't know what the future holds but my breathing is limited because of the vocal cords not opening enough and I think that is what you are experiencing. And they can't make them work any better, the only thing they can do is operate and shave some tissue off the vocal cords and make the opening bigger every 3 months in an enlarging the opening procedure and it is an involved procedure.

From my recent visit to Hershey Medical for vocal cord evaluation--5/18/22

"What the doctor said was they can't get the vocal cords to work any better, there is nothing they can do in that respect.

What they would have to do is cut the vocal cords and basically shave some tissue off

which would make the opening bigger through the vocal cord area.

But that can create scar tissue which will build back some of the restrictions we are trying to get rid of.

Also taking some tissue away would open the possibility of liquid going through more so.

There are several or more complications that may or may not occur.

They would take a little at a time in as many as 3 operations.

The doctor said most times it is at least 2 operations for this situation.

Operate and let it heal and go back in 3 months.

Operate and let it heal and go back in 3 months.

Taking all the factors into account I don't think they can really guarantee the outcome in the end.

The operations themselves cause swelling.

So I would get a trach probably for at least 6 months, and more like 9 months, and then maybe up to a year or more.

Also when I get the trach they want you to spend 5 days in the hospital before you can go home.

So I think right now I am still pretty functional and know what I got so I will just deal with what I got and "Be Thankful to the Lord for His Blessings on Me" and deal with the things of the future as they come.

Logan best of luck and God's Blessings on you-Russ

Logan51

Thank you, Russ.

What has me a bit confused is how Rad damage scar tissue had this effect on the functioning 1/2 of my larynx: effectively making it similar to the non-functioning side with the dead nerve and larynx fold protruding out into my air passage.

Maybe the Rads damaged the main nerve controlling the functioning side?

Does the scar tissue gum things up so movement is compromised? But to be stuck out, like it is, into my air passage?

And, to really only notice a breathing change some 6 years after tx, I assume it was a gradual growth of scar tissue- but why does scar tissue growth continue?

These are a couple of the questions I want answered. My ENT essentially told me what you posted, but not in as much detail- so thanks for the details.

wbcgaruss

Logan, in my case, my first problems with my vocal cords came about during my stay for 36 days in the hospital in 2019 Sept. to Oct. I had one lymph node with cancer, only one, but it had spread outside the node, hence it was a more involved operation and caused more damage than hoped as they had to take some muscle and tissue. If you would see me it is very obvious which side the operation was on and my shoulder slopes down a bit on that side. I also had complications with numerous things and was operated on a total of 6 times and each time intubated. So my damage started at that time as I had trouble breathing and got a trach at that time and left the hospital with it. I was eventually able to get the trach out several months later but the damage is there as I can't do strenuous work or I quickly run out of breath and need to do those things in short stints a little at a time.

So to this day, I have a paralyzed vocal cord, and the radiation I had previously may be affecting it too I don't know. You know in this treatment and this area of the body there are many unknowns. So in your case, I think you said you had heavy radiation. I think all this treatment causes some damage outright but they never know how much will happen till you get it and then it is a matter of seeing how far you will recover from it and what you will get back, such as swallowing, or speech, or saliva, etc. So in your case, my case, etc. where radiation is involved we recovered so far but radiation makes the tissue more leathery, more brittle and I think that can get a little worse over the years, and then of course the aging process adds into it and just getting older and things working less efficiently adds into it. So I think we are similar in the fact that they can't make our vocal cords work any better all they can do is surgically remove tissue to make the opening bigger so we can breathe better. Logan, I would ask your ENT about this procedure if you think it might work. Get all the facts. You may be able to avoid a permanent trach, I don't know. But keep in mind you will be with a trach for 6-9 months, or up to a year. It's a trade-off, to do this now and avoid a permanent trach later.

My damage may be exacerbated by the 2 times I have had radiation but it was originally thought that either a nerve was nicked or cut during my lymph operation, and I don't fault the doctor that operated at all she had to do what was necessary once in there to get the cancer out. The other thing that may have caused damage or added to it was the number of times I was intubated. I give great credit to my team at Hershey, they did what they had to do and saved my life by getting the cancer out.

I cannot find a lot of info on radiation and scar tissue in the long term. I think you get scar damage from radiation and it may advance over the years a little and then the aging process comes into play where skin and tissue just gets less soft and pliable, not like a baby's skin anymore, that's for sure. I did find this though, talking about Fibrosis: Post-surgical, Radiation-induced, and Cording. This relates to breast cancer but radiation would have the same effect on all tissue no matter where it is in the body I assume.

https://lymphaticnetwork.org/news-events/understanding-breast-cancer-related-fibrosis

Exact info on a lot of this stuff related to long-term effects is not easy to find for anything exact. I think that is because there are so many different circumstances in each person's cancer and treatment. Below are 2 more links about long-term cancer effects that folks may find interesting. One from Radiation Oncology Journal and one from Macmillan cancer support.

https://www.e-roj.org/journal/view.php?number=1453

https://www.macmillan.org.uk/cancer-information-and-support/impacts-of-cancer/late-effects-of-head-and-neck-cancer-treatments

Hope something here helps someone.

Wishing You the Best

Take Care God Bless-Russ

Logan51

Thank you, Russ.