Thanks for your kind thoughts.. I appreciate everyone's help and reponse.

RJM

He had his swallow test last week. No improvement over the last one that was done in August. There was slight Aspiration and they are going to use some stronger electric stimulation to try and stimulate the muscles. His speach patholigist seems to be aware of all of the various treatments and told me that this could be a life long problem for him. Waiting to see if the next set of electric shock treatments do any good.

Thanks all
RJM

Thanks so much for your tip on feeding problems. I will give this a try.

I am sorry to hear that you have similar health issues. I am only the caregiver, but I have seen the pain and frustration that my husband has suffered and my heart goes out to both you and your wife. When I say a prayer at night for my husband, I will include you.

I also gave my husband your tip on the spitting problems. He said the tissue was a good idea and he is using this to clean out his mouth after rinsing.

Take care RJM

Thanks for your insight and I will keep in touch regarding his progress.

Warmest regards
RJM

RJM

Thank you for sharing that my "tips & tricks" may be able to help. I can relate to your husbands pain and frustration. To be literally excommunicated from the social bonding activity of breaking bread is heartbreaking for both the patient and their caregiver. I hope your husband does regain his swallowing but trust me, it's possible to have a very good life even on a feeding tube forever. It's way too early to tell your husband's future so let's hope for the best.
Charm

This may be helpful to you. Im not sure if it is still going on or not. Contact Nicole at [email protected]

Swallowing Study

Is your husband taking anything by mouth right now? The presence of "slight aspiration" on MBS shouldn't fully preclude him from eating small amounts especially if he hasn't had a recent history of respiratory infections/pneumonia. Check with your SLP to see if you can be doing trials of safer food/fluids at home. If it's "safer" for him to swallow small amounts of apple sauce for example, with a posture (like a chin tuck) that increases the protection of the airway then your SLP may feel comfortable training you both to know what to look for so that you know if and when you should stop with the limited trials to minimize aspiration risk. The more he can use the muscles of the swallow the sooner he's likely to see progress. Keep at it - I consider "slight" aspiration not to be too bad of a thing - it may be managed and/or improved!

RJM

In addition to the SLP, a good prosthodontist may be able to help. Mine made me a "palate drop" since I could not touch the roof of my mouth with my tongue. It immediately improved my ability to "spit" out the mucous as well as my speech. I had a second one made a year later with some extra extensions designed to overcome the swallowing difficulties shown in my MBS but no luck, although it did improve my speech even more.
It can not hurt to have an evaluation.
Charm

RJM

I hope you saw Leslie's fantastic post of Roger Ebert's column on not being able to eat or drink but living forever on a G tube. Go to that link, print it out for your husband.
Also there was another link in that column to yet another blog entry by Ebert that had this to say
[quote]I mentioned that I can no longer eat or drink. A reader wrote: "That sounds so sad. Do you miss it?" Not so much really. Not anymore...Let me return to the original question: Isn't it sad to be unable eat or drink? Not as sad as you might imagine. I save an enormous amount of time. I have control of my weight. Everything agrees with me. And so on.

What I miss is the society. Lunch and dinner are the two occasions when we most easily meet with friends and family. They're the first way we experience places far from home. Where we sit to regard the passing parade. How we learn indirectly of other cultures. When we feel good together. Meals are when we get a lot of our talking done -- probably most of our recreational talking. That's what I miss.[/quote]
Here is the link to that other blog: NIL by mouth
Now I don't have to wrestle with the right words to share with you, these two blogs do it all. I hope your husband will like them
Charm

Hi RJM,

I'm also a Speech Pathologist and was looking at the site for one of my patients. I work with a lot of H&N pts and one thing that I thought was curious about your initial post was the comment that his left side was affected and so he can't do his tube feedings by himself.

I was wondering about the reasoning behind this? It's not too unusual for damage to one of the cranial nerves (XI) to cause difficulty with shoulder mobility but more general L sided weakness is not that usual and suggests that something else might be going on, such as a stroke. Has this been ruled out? This can happen during surgery and often doesn't get picked up during the hospitalization.

That said, it doesn't change the treatment plan much - swallow evaluations and treatment are pretty similar regardless of the etiology of his dysphagia, but it would potentially change the timeline. There is some spontaneous recovery after stroke and the rehab course of a stroke in conjunction with H&N cancer treatment would be longer and slower but not necessarily impossible.

Anyway, just another thought to add into the mix.

My best to you all,
Andrew Palmer, MS, CCC-SLP