Hi all --

Barry had his swallowing evaluation at Hopkins yesterday -- bit of a snafu earlier when they failed to page the therapist that we were there and waiting, but eventually we got together and he had it done.

Essentially, they had him swallow various materials tagged with barium and watched the functioning of his throat and esophagus on a fluoroscope (moving radiograph) -- also, they had him enunciate various words and sounds, also watched by fluoroscope. They also checked the passage of swallowed materials into his stomach.

What he had to swallow included a thin liquid (milk-like), a thicker liquid (like a cream soup), applesauce, and part of a graham cracker with a barium "paste" on it. Volumes of all of these were relatively small. He had no problems with any of these although he had not drunk (or eaten) anything since 10 pm the night before (the therapist explained that they want the throat and mouth to be dry so that the barium shows everything. He could rinse and spit out water a bit if he really got too dry.)

We do not have the written report yet but the therapist met with us afterwards. She had some interesting things to say. First, she said Barry still has swelling in his soft palate and epiglottis, which was not unexpected and in fact, said in that regard he was better off than 90% of the people she usually sees 5 weeks' out from treatment. However, this is still preventing his muscles from working 100% efficiently at moving food back into his pharynx, and his epiglottis from closing (seating) completely when he swallows so he did aspirate some of the material -- interestingly, mostly the thick liquid. It seems to get "hung up" in the back of the throat and then, some gets into his trachea when he breathes.

She agreed with the doctor's thoughts, that when Barry had the pneumonia that it may well have started with aspirated food -- at the time Barry was using "Larry's mix" -- one of those numbing rinses -- and she felt this makes the risk of food aspiration much greater (which our RO nurse also says). In fact Barry stopped using this mix at that point because we got worried about aspiration.

She also said that she wanted to give him some exercises to improve his swallowing which, together with resolution of the swelling, should alleviate the problem. She did warn -- and this should be considered by everyone who gets radiation -- that many problems with swallowing etc. due to radiation damage do not show up immediately, but gradually "creep up" in the year or so aferwards. Thus swallowing exercises should be continued even after the person appears back to normal.

She added that initially Hopkins only did swallowing and speech therapy with people who had had oral surgery, but then were finding their HNC radiation patients coming back a year out and reporting serious swallowing problems -- she said, "now we've gotten smart and everyone gets an evaluation. It is much easier to solve the problems if we catch them early." She agreed that patients who relied 100% on the PEG generally had the most problems, but this varied a lot with individuals.

She added that many times, aspiration of food or liquid is "silent" -- that is, it does not lead to coughing, choking or a feeling of having something "going down the wrong pipe." In part this is due to the nerve endings in the region being damaged by the radiation and also, being somewhat desensitized due to the repeated mild aspiration. She told Barry to avoid thick liquids (great, mostly what he eats now!) unless he also uses a lot of water to make sure it doesn't get "hung up" -- that it gets swallowed before he breathes. She wanted him to try less sticky foods and to try dryer things as well, since he had eaten the bit of cracker OK.

She also said to watch for the signs of pneumonia -- especially -- emphasis mine *excessive colored phelgm*, pain breathing etc. though she said several times that Barry did not have the characteristics of someone vulnerable to pneumonia and in fact, if it had not been for his earlier bout with it, would not have been so concerned about the minor aspiration problem.

We met later with our RO, resident and nurse and they did an endoscopic exam -- Barry doesn't have any open ulcers or sores, just some residual inflammation and it all looks good. Right side looks most inflamed (where he had most rads, also surgery), hence the pain. RO said that the problems therapist noted re thickening of pharynx and epiglottis were almost certainly temporary and would resolve in time. He added that on a scale of 1-10, 10 being best, Barry was at this point a 9.5 so he should just continue doing what he is doing. He agreed with swallowing therapy however, and also, the continued use of the Thera-bite. He wrote scrip for the new 12.5 mcg Duragesics as he wants Barry to try to wean off the patch over next week or so.

Next appointment is Monday with our ENT -- the woman who herself had HNC -- so Barry will probably have another fun visit from the endoscope! At least she gives you a lollypop afterwards!

Best,
Gail and Barry