While my attitude during the actual tongue surgery and neck dissection will be "Wake me when it's over", I want to start swallowing therapy asap. I snagged a quick meeting with a speech therapist at the hospital for tomorrow by calling the head of the department but wanted to check with this board for real life knowledge. If I have to finally get a PEG, then I want it out asap also. So when did swallowing therapy start?
I used the search function and did not come up with anything for FEESST (flexible Endoscopic Evaluation of Swallowing with Sensory Testing) or for VFSS (videoflurograhic swallowing study)
It looks like both of these tests can provide real time feedback on the effectiveneess of compensatory maneuvers (like Head Turn, Chin Tuck, Effortful Swallow, Shaker exercise, Supraglottic Swallow & Mendelsohn Maneuver)
Did anybody here have these tests done?
Any and all comments on swallowing and eating again quickly after surgery? I may be overly optimistic but since I already had my 7200 GY of radiation and my mouth turned to hamburger and mucous - I will not have that as a complicating factor. My tissues had returned to normal (except for the cancer cells coming back of course).

Hey Charm -

I started my speech / swalling therapy a week after I got out of the hospital. I would have actually started sooner (if that is possible) but we hit an insurance snag and had to wait until it was resolved. I had the barium swallow study done at my second session - basically they give you different things dipped in barium and tell you to eat it (water, applesauce, a cracker, etc)and after that I was able to start eating by mouth - the test was pretty neat and I eventually got to watch it because they recorded it. They would not let me eat anything by mouth until they did the swallow study to make sure I wasn't aspirating without knowing it. They wanted me to take it easy at first with eating and stuff because of the stitches for the flap. It didn't take too long to start swallowing after the surgery, but I was only able to work up to pastas and some fish before the radiation side effects kicked in! The hardest part is getting used to how your tongue works after the surgery and relearning how to maneuver food around - you look pretty crazy for a while. So, hope this helps.

Stephanie

thanks. It does indeed help -

Charm

They removed my tongue from the back forward and my flap is sewn down to the floor of my mouth so it does not move like a tongue. It sounds like Stephanie's is different from mine and I hope that yours is too. You will probably be able to eat more than I will. They would not even let me drink water for two weeks after my surgery to make sure that the flap took. Then I was allowed water for the first day only, clear liquids from there.

I started therapy about 2 weeks after they released me from the hospital and I am still going now. Pre-radiation I had worked up to almost oatmeal. You will be fortunate to not have to go through radiation again. I had to stop therapy for 2 weeks near the end of rad. Now I am having some difficulties post radiation with swallowing, the stiffness in my neck and it feels as if my throat has constricted. I have been doing lots of stretching exercises but I am still getting stiff. (ENT appointment tomorrow) Right now I can swallow cream soups, cream of wheat, yogurt and pudding if I thin them down a bit.

When I first was released to liquids in the hospital they sent a swallow therapist in to my room. She had applesauce and pudding with her which I was no where near capable of doing then. When I told her that I did not think that I could do the applesauce just yet, she left the room and came back with a Xerox copy of about 15 pages of total glossectomy data that basically said that I would not swallow again and left. It's a good thing I did not listen to her.

Patty

Hi Charm,

I worked with a speech/swallow therapist while still in the hospital. Unlike Stephanie, I never had to have a swallow study, since it was clear that I wasn't having any trouble swallowing. I was eating pretty normally, although slowly, within six weeks when radiation/chemo started. I do pretty well now although I have to remember to take small bites and keep the flap out of the way of the teeth. Slow and careful is my new eating mantra.

- Margaret

Patty

Thanks. Yes, swallowing therapists vary in approach and efficacy which is why I appreciate the OCF replies. I am hoping my flap will be good as the plastic/reconstructive surgeon authored a paper "Maximizing Flap Insert for Tongue Reconstruction" that touts modifications (tongue tip rotation, Z-plasty & imbrication of floor of mouth)which purport to improve swallowing.
The snow flurry here caused my appointment with speech therapist to be postponed until tomorrow at 7:45 am

Margaret

I really like the sound of that. [quote]I never had to have a swallow study, since it was clear that I wasn't having any trouble swallowing. [/quote] My ENT surgeon's office just called and now says expect 11 days instead of 7 in hospital. Not what I wanted to hear. Slow and careful sounds good also and I hope to be there post surgery.