So.

Here I am nearly 5 years out of treatment, and now, after having swallowing problems for a few months, finally had an esophagram last week that shows that I'm aspirating material into my trachea when I swallow. Not good.

Not only that, but the two doctors involved - ENT and GI - seem to be passing the buck between them, each telling me in effect that it's the other guy's area of concern.

Shortly after I finished rads in June of '09 I had a similiar issue and had more complete swallowing tests and a few sessions with a swallow specialist. Thought I was done with this nonsense. Not so fast...

My question is for those who've had similar issues on a long term basis. What was the treatment, if anything? Am I looking at a permanent feeding tube, or are there things to be done - surgically? Therapy wise? Food choice wise?

Any guidance greatly appreciated.

David, find you the right type of doctor to address this. They are bouncing you around because they truly don't know what to do. You have many options ahead of you but first must feel comfortable with the answers to your questions. A larynx specialist/surgeon can give you the most likely case for the future but not the timing. I've dealt with this for 7 years although pneumonia three times this season. It has resolved many times with minimal treatment but this time I actually had to see a doctor and get an X-ray so he would feel better.

Don't worry about the future and what may happen just enjoy today while you gather more info. There are exercises to do based on what is wrong. My epiglottis doesn't lift on one side and the opposite vocal cord doesn't always activate. I hack in food for hours after eating. I change textures often to avoid the seepage into the lungs. My voice seldom works from everything pooling up in the voice box. If I would have taken my surgeon's advice I would have been a laryngectomee years ago. I personally didn't think it was time and still don't. I contacted a friend who is a voice coach for singers and came up with glottal exercises to crisply start the lifer. I also found ways to forcefully start the vocal cords by starting the noise slightly before I talk. Learn the biomechanics and you will find strategies that work.

Swallowing is something that the more you understand about it, the better you can manage the little differences. Ironically, deficits today may be fine tomorrow.

Ed

Ed, that's tremendous info and great advice. I thank you.

I put in a call to my RO today and spoke with her nurse, who as much as anyone got me through my treatment back then. She's going to speak to the doc on Monday. I have confidence they'll put me onto the right people, of whom I have no doubt there are many in this town. Among UCLA, USC and Cedars Sinai Hosp I'm sure to find someone who can zero in on this.

Many thanks for the good words as always.

Hi David, we have similar problems and History. I am about four and one half years past TX. I too have swallowing problems. I had pneumonia several times over the last year, last time the light went on and they did a swallowing test ( Mission in OC) Bingo!Radiation damage to my neck has my larynx not moving up...aspiration pneumonia. So they immediately put me on thickeners for my fluid. Actually I do not use it for coffee or beer!It works pretty well and I aspirate significantly less, maybe even 90% less. I am also doing some neck exercises. Specifically, I lie on my back and try to look at my toes, very very hard to do for me anyway. I am a bit freaked out over it as I like you do not want to go back on a tube. I think for now I am OK. I do wonder as I get older though!I am 63 now.

So, I am just being diligent about the thickener and exercise and will keep moving forward. I would be quite interested to see what path your docs send you on

Steve

Steve, thanks for that. I'm hoping to speak with my RO today and expect to be sent for a further round of swallowing tests. Had them 4 years ago when this first cropped up. To be sure I'm worried about pneumonia... as if any of us needs that!

I'll post any further developments. Appreciate your weighing in and hope things are going well for you down there in the wilds of Orange County!

david,

I have to say that the thickened fluids and the neck exercises have really helped...At least that is the way it feels, much less aspirating, not gone but significantly better. I use a product called simplythick in most of the fluid I drink. Not coffee or beer though. You can find it on line.

Like Ed, I am learning to deal with it,bit by bit

If you find any wizards at UCLA let me know. We all have to find the solutions on these tough ones.

You can PM me and I will give you more info on the thickening routine.

Steve

Thanks, Steve. Tomorrow morning I've got an appointment with Dr. Gerald Berke. He's chief of head and neck surgery at UCLA and comes highly recommended. I'll report on progress as I go and will indeed check in with you if he suggests the thickening agent.

Good luck tomorrow David. Maybe you, Steve and I can get a group discount for the swallow boot camp in Seattle! I'll be darned if I don't have pneumonia again for the third time since November.

I also do the exercise you mention, Steve, laying on the back and raising the head to see the toes. They told me to do it for a minute at a time. After a year doing it many times a week, I'm up to 30 seconds for 10 times. I think that's about the hardest exercise I remember. I also lift the head straight up while laying on my back. That ones not so bad now the core is built back somewhat.

I also added a whole bunch of neck exercises to get rid of the neck brace and avoid a halo. So far so good. I've managed to build enough support with the little muscles even though my rhomboids and sternocleidomastoid muscles have completely corded out.

It must all be working because I have just a little neck discomfort at times. I've moved out my special neck stretches to once a month from twice a week a year ago. Overall with all the muscle issues I've gone from 3 or 4 hrs a week down to 2 hrs a month. I have not taken any pain meds or meds period for 54 weeks. A new record.

Your case sounds exactly like my husbands. I so wish I had found this site sooner. We were never told this could happen. I didn't even know what aspiration was. His scans kept showing a lung infection and they would put him on an antibiotic. He kept losing weight and choking more. He finally went to a Swallowing Disorder Clinic and took 8 weeks of therapy. It really helped. Had he done it before he lost 40 lbs he probably could have avoided the tube. He is on it now and trying to get his strength and weight back. We are also looking into surgical alternatives. Another thing I found out too late was that Hormel makes pureed meals - very good meals: chicken & gravy, beef & gravy, pasta & sauces etc. They are in the consistency of mashed potatoes. He had them in the hospital while awaiting his tube and you can buy them ready to heat. Will keep you posted if we find more answers.

Thanks for contributing, Cheryl, and I'm so sorry to hear about the travails your husband is enduring. It's a little unbelievable in fact for me to hear that they didn't spot the swallowing disorder right away. All of my doctors brought that up immediately when I started describing symptoms. There must be something else at work with him that would lead them to think otherwise.

I'll keep my good thoughts flowing your way and his. Compared to him what I'm experiencing is a walk in the park.