Rosy,

A Speech Pathologist was part of my team at Johns Hopkins. I'm scheduled for a swallowing evaluation in August. She's been great. I have swallowing exercises that I do (should do more but I do get them in for the most part).

If they haven't referred you then I would definitely ask.

"T"

Look you need calories and hydration or everything will go south fast. Have you considered a nasal tube?

Speech and swallow therapist, also called speech language pathologist, usually works with the ENT, and are often in the same department, mine are. You need to do exercises, there are about 15 of them. There is also devises therabyte, and dynasplint (sp) that helps improve mouth opening or just using the old wooden tongue depressors. It's very important to do these mouth opening exercises the first 3 months, otherwise there is little that may be helpful after that when fibrosis sets in.

iPad, and maybe other devises, have an apps called iswallow. It's geared to be used in conjunction with a therapist, but you can access the videos to see them. If you look at iswallow here, a member made a link to rehabilitative exercises, on 1/13/13 on a post.

Rosemary, my husband thought he was swallowing six teaspoons of supplement a day, but after three days, we realized that it was all coming back up. He choked whenever he tried to swallow anything. At that point, we asked for a referral for the swallowing assessment which showed that the liquids were pooling just before his esophagus and would not go down. He has now got a referral to a gastroenterologist who does esophagus dilations and who will be investigating what is causing the blockage. Talk to your RO now about these referrals. If a lot of choking goes on, it really may be indicative of aspiration.

I would just like to add that the speech and language pathologist looks at the swallowing muscles and other compensatory strategies, but it is not her "area" if the problem is lower down. Our SLP at the swallowing assessment actually told us that there was nothing more she could do for us. If it is blockage at the esophagus, your best bet would be a gastroenterologist.

Push your doctors for a referral, if the blockage is caused by scarring, then the longer the wait is, the harder it will be to deal with it.

Ok, Monday morn I will be calling the ENT since I don't have another appointment with him until August 27th.
David, I have a PEG. I stopped using it because I was doing pretty good, I had went a whole week and gained back one pound. That is what is confusing, I don't understand why I am going backwards with my swallowing. It seems 2 weeks ago it was difficult but I could swallow with no fluids, 1 week ago I had to drink fluids to get food down, the last few days I choke on every bite. I really feel like I am going backwards in my recovery, more pain, more difficulties swallowing, less sleep, and I am loosing weight again. Maybe I pushed it to hard but I really want that PEG out! I kind of feel like its a rope holding me down and when it is removed I will be free again.
I have also been doing yard work again, mowing an acre and half, weed eating, trimming bushes and cutting down some hedges. Is it to soon for all of this? Am I doing more harm than good? I have been spending a couple hours out in the yard a few days a week for the last few weeks. Also back to work about 30 hours a week. I was tired afterwards but I felt OK, felt good to get off my butt. This week everything just went backwards. I ache, I am exhausted, I don't understand.

P.S
Thanks for all the input, I prob don't speak to my docs as much as I should but sad to say 2 of them always seem so busy I don't want to bother them, 1 of them albeit very helpful, I have only seen once since surgery, and the other one doesn't listen to me he just barks at me what I should be doing without listening to my reasons I am having problems doing it. Sad to say I feel like I have learned more and got better advice from this forum.

Don't feel bad, most feel the same way about their doctors not spending enough time with them, or not getting a good enough explanation. You can take notes, but that can disrupt the continuity of the conversation. I think it's better to write down the answers to your wriiten questions, as soon as you leave the office. The same with recording the physician, with permission. He or she may answer guardingly, and may not get an honest answer for lack of better words, and may not trust you, I wouldn't. You could bring another person who can take notes instead.

The yard work may be a bit much. Bedsides being strenuous, there is the allergies, and even risk of infection from the various organisms, with a compromised immune system, such as cancer, so wear gloves, face mask when doing.

They don't say this is a roller coaster ride for nothing. You will have ups and downs, and set backs. I'm 3.8 years from diagnosis, and have several issues, well, maybe more than several, but can't complain.

Rosy - you have gotten such great advice above. I just want to put my 2 cents worth in about busy doctors: I had some surgery last year unrelated to cancer but surgery which required the attention of two very busy doctors and some robotic surgery. When I saw how busy especially one of them was with a waiting room filled to capacity, I decided the only way I was going to get all my questions answered was to type out all the questions I had. With one doctor, I sent a FAX to his office in the evening and the next morning I got a personal call from him. He answered every one of my questions and told me he wished all his patients could do the same. The second doctor was also sent a FAX in which I also suggested I would be happy to receive a reply from the secretary or anyone in the office. The next day I received a reply from his secretary that answered all my questions. With each of the doctors, whenever I had an appointment, I carried two copies with me of all my questions with spaces in between the questions so that I could give them one copy and follow along on my copy, writing down his answers. The first doctor just took a pen and wrote down what he was telling me on his copy and gave that back to me! Rosy - Your health is very important and you deserve to get ALL your questions answered. Make copies of all your questions for each and every doctor so they all know where you are coming from. Keep pushing for answers and let us know what's happening.