New as of today. Wish I had known about this site years ago.
In brief: T2N2 (L) tonsill SC cancer 1993. Presented as a painless lump sensation in the throat upon swallowing while in Desert Storm. Upon return the post ENT specialist assured me I didn't need to worry but 18 months later had palpable neck nodes and knew something bad was ongoing.
Underwent Tonsillectomy/(L) radical neck then 6 weeks twice a day radiation treament. Getting through radiation treatment was the toughest thing I've ever done. It is my understanding this form of XRT treatment is no longer done(told tome by ENT @ MD Anderson 2 years ago).
5 years later developed shortness of breath on long runs and found to have complete (L) vocal cord paralysis. Completely quit running 5 years ago as couldn't get enough air in. Really have to pace my self with any form of exercise now to ensure enough air gets in. Speech problems began 5-6 years out and have been relentless/progressive to date with no functional tongue motion remaining. Difficult to understand me as expected but can communicate enough to be basically understood. Now at the point of completely retiring very soon and trying to just deal with current issues.
I would like to hear from any of you that may have had/are having the following issues I deal with everyday/all day but need advice on.
a) Swallowing (difficult) is always associated with aspiration past 2 years but worse now then ever; 2 pneumonia bouts in the past year (one from documented Influenza A despite the flu vaccine). When do you reach that point that you know you have no choice but to get a PEG? I'm one who drags their foot as long as possible and almost have to be hit over the head before I give in. I am my own worst enemy at times because I'm afraid to burn any bridges I can not go back across later on.
b)Air exchange: I have exercised all my life but now with breathing getting to be a major challenge with any type of aerobic exertion, I'm wondering if I should seriiously consider some type of T-tube. The thought of this is scary to me. Any of you been in similar circumstances or had to have some form of a T-tube placed? PLease share you experiences and advice.
This is a little about me who has been trying to dodge boulders along a path I began to walk 15 years ago.
Thank you

Dear Lelfrink
After my op, I had one paralized vocal cord and traceal stenosis (narrowing of the wind pipe, which to my layman ears sounds a similar problem to yours)
I had to wait for 2 years till the one vocal cord compensated and then I had a traceal resection. (the narrowed part of my trachea was removed)
My ENT guy said he could have done some work on my vocal cards if nescesary, so maybe that needs a second opinion
A thorasic surgeon was in charge of the resection, I was fitted with a t-tube for six weeks after to allow everything to heal, and I must say before I could not even climb one flight of stairs and everyone who knew me (including the Docs) were under strict instructuions not to make me laugh, that would cause a major choking fit.
There is a Yahoo group for traceal stenosis that maybe a help for you at the moment.If you need a PEG get one, everyone here who needed one coped with it well.
Hope some of this helps
Sunshine.. love and hugs
Helen
Please excuse any spelling mistakes, Googles spell check has stopped working

Hi,
Welcome to the forum and sorry you are having all these difficulties.

I had XRT in 1997 and am not having those problems at this point although the total laryngetcomy in 2001 solved most of the choking on food issues. The swallowing issues I had after radiation involved choking on certain foods. I found that if I avoided the ones that I knew were problems, most of the rest would go down. Everything had to be cut in tiny pieces and I was only able to eat foods in lots of gravy or sauce or very rare steak or lamb chops. Anything dry was a no no. Also drank a lot of liquid with meals. Things gradually improved over the first couple of years. I certainly never regressed as you have.

I have never had problems breathing. Are you certain that this is not COPD? Were you a smoker? Have you had a CT of the chest or bronchoscopy? What does the lung dr say is causing the breathing difficulty. Hopefully this is not something else I get to look forward to.

Take care,
Eileen
P.S. I think they still use XRT on unknown primaries and a few others where they is no eal target.

Thank you Eileen. I never,ever smoked and have no history of COPD. My problem with breathing is near totat bilateral vocal cord paralysis as a result of radiation and surgery. The only known treatment is either remove part of the vocal cord or a T-tube in the trachea. Unfortunately, swallowing causes issues with recurrent inflammation of the vocal cord area and sets me up for a viscious daily cycle that I live with. Such is life.
Don

Thanks Helen for sharing your experiences. I met with my ENT doc a year ago to discuss options. He also mentioned a vocal cord laser procedure where part of the paralyzed cord is excised. I declined because of a fear that would set me up for even more aspiration issues assoicated with eating/drinking and he mentioned I would lose more of my ability to talk & sound kind of "breathy" what ever he meant by that. Once done there is no going backwards to undue the procedure so I was scared to proceed.
The idea of a PEG is a little spooky as well as I'm a pretty active fellow physically, within reason, and would worry about sufficient calories and nutrition. I suspect one day I will have no choice on the PEG and possibly on a "T" trach tube. In the meantime, it's one day at a time.
Don

Sorry to hear about all of your problems. My husband has a trach tube since Nov. Only problem seems to be a lot of mucus that we are told will eventually stop. He has had this peg tube for almost a year now when he had his reoccurance. He will have both for the rest of his life. The peg is wonderful. He puts all kinds of food in it as well as prescription nutritional drinks (Jevity 2.5) and a high calorie supplement from Walgreens on line called Benecalorie that is great. He no longer chokes and is quite active. It took some getting use to but I know he would not be here today with out it. He maintained his weight through treatment and is beginning to gain now. A small price to pay to be able to enjoy the grandchildren.