Steve,

I am 3 months out and I can eat and swallow anything I want. I still can't taste much and I still have that dry mouth thing but I can eat. I started with mashed potatoes, mac & cheese, fruit cocktail and kept trying more challenging things to gain my confidence back. I was sensitive to cold and red sauce initially but nothing bothers me now.

I also found yawning helped stretch my mouth more naturally. I also open my mouth as wide as I can when I think about it and I really don't have any opening problems.

Hang in there, it only gets better now.

Steve,
Glad to hear you're making good progress. Who'd have thought that eating would ever be as daunting as it is post TX?

Like you I had severe limitation opening my mouth. I could barely force the tip of my finger between my teeth.

A good bit of my problem was surgically related since I had 50% of my mandible removed and reconstructed with titanium and fibula. There was a degree of muscle mass lost as well during the tumor removal and rebilding the inside of my mouth.

I asked my dental oncologist about the therabite and he said that while there was potential benefit to using it, patient compliance was a bit of an issue. It's like the stationary bikes we all have in our garage; they really help, all you have to do is use it ;^)

They are expensive, so you really have to be dedicated to making use of it.

I have a relative who is a theraputic massage therapist, and he spent about 45 minutes massaging the jaw hinge, my neck and my shoulder. End result was over 100% improvement in my ability to open my mouth, and with additional treatments it's continued to improve.

I have just started seeing a speech therapist as well, and I think it's a great "next step".

I notice that my speech clarity suffers under very specific circumstances, and the therpaist is confident we can develop coping techniques to eliminate the problem.

Wayne

Thank you all for the feedback and suggestions.

I tried mashed potatoes on Thanksgiving and they didn't work too well (the swallowing thing). That, of course, was then. Things get better daily so I'm up to trying them again. The potato soup sounded like a great option too, and the suggestion of pot pies sounds awesome as well. They're so inexpensive I may have to give that one a try now. (thanks August & Diane)

I will check out the therabyte on line and investigate it further. My wife said she can understand me fine, and friends I see, folks on the phone say they feel I'm speaking well, (I hope they aren't just patronizing me)
My wife says that after I speak for a while I do lisp some and sound as though I've had a mild stroke, so I might pursue the therapist aspect, not only from an eating/excercise angle but speaking as well. It sounds like you find it beneficial Dragan.

It's very strange how all of us have the same, yet different sensations and issues post treatment. We could make a great eating team David! My taste is already coming back some, I just can't swallow, and you can swallow but still can't taste well. I know that you are farther out post treatment than I am but I remember in another post you saying that with the exception of some post treatment swelling and soreness you hardly skipped a beat with being able to eat OK. That's wonderful considering others struggle for many, many months. I feel blessed to be eating what I am right now.

I guess we all have a somewhat similar journey, just with different bumps (and smooth spots) in the road!! Thank you and Bless you all!!

Steve

Steve, here are more "slippery" things to try. Chicken thigh and leg meat in small bites, soft cooked rice in chicken broth, jello made with fruit juices [for extra calories and nutrition] rather than all water, angel hair pasta with non-spicy red sauces[ add ground beef if you can tolerate it] Scrambled eggs [add a little chicken broth to eggs before cooking, add spinach,cooked broccoli and\or a good melt-able cheese during cooking]. Sounds like you are doing pretty well. Amy

Hi Steve, It's funny Jack had a hard time with mashed potatoes too even when he was eating harder things like a hamburger and nachos with melted cheese - go figure. For some reason potatos were like cement in his mouth whether they were baked, mashed, with butter or gravey. It just didn't work for him for 5 months and made absolutely no sense. He also had a problem with pudding and ice cream unless it was in the protein milk shakes. Red sauce took 5 months and spicey is still hard for him.

At 2 months post treatment we did a road trip to Virginia see my nephew compete in the junior olympics. Jack still had his feeding tube but was experimenting with eating so he could get rid of it. We found one of those great all you can eat southern seafood buffets and that was the turning point. There was several rooms of food to try and he had a great time going from dish to dish to see what worked and what didn't. He found crab imperial and oysters rockerfeller worked that night - and would go back and stand at the buffet until they brought out new hot batches of the stuff that he liked.

You're on a roll - go find a buffet.

I think the therabyte was worth it for Jack, we got a prescription so it was covered by our insurance. You do need to make it part of your daily routine or it's useless, David is right about that. Jack went to a speech therapist following treatment and also found that helpful. His speech was very good but as he got tired that lisp thing was there. People who didn't know his voice extremely well would not have noticed but it bothered him. There are exercises that will improve your swallowing as well as your speech so it's worth a consult. The muscles in your mouth need exercise just like an arm or leg, and it's the type of thing you can learn and do yourself. Considering everything you've just gone through, the rehab is the good part. It makes you feel like you're doing something positive and you see results.

Regards JoAnne
PS ...and we got to see my nephew win a gold medal so it really was a good trip

Thanks for the tips Amy & JoAnne.

The Juicy Jell-O sounds excellent and since eggs are working I'll have to try them scrambled with some broth. A seafood buffet (along with the road trip to Virginia) sounds like a plan. I love seafood and our oldest son is in Virginia Beach, VA, so that entire suggestion works great. (He's in the Navy and stationed in Norfolk)
Great reason to see the Grandkids as soon as the doctor visits slow down! (hopefully the first of the year!) We would have to do it around the two younger children being out of school though, or else con their older sister, who just moved back to the area, (after her stint in the Marines-talk about ultimate sibling rivalry!!! LOL) into staying with them for a few days.

The more I hear about the benefits of a speech therapist the more positive I'm feeling about considering it. And JoAnne, like Jack, I'm probably more conscious about my speech than anyone else is, so it would probably help me mentally as well.

Thanks All. Best Regards,

Steve

Just a couple of food suggestions that worked well wih my son who also loves seafood: 1) crab salad with thinkly sliced and chopped celery and onion (or onion powder) and lots and lots of mayonnaise with tiny sea shell noodles. My son likes the fake crab but I've combined fake and real crab also. 2) Potato soup recipe that I got from a chef at a well known restaurant: Chop a peeled potato in very small cubes and cook with chopped onion in water until the potatoes are very soft and water has boiled almost away. Mix a can of cream of chicken soup (1/2 can) with a little cream or milk and then strain the chicken out. Add soup/milk mixture to potato. Stir and add more milk or cream until soup is at desired consistency. Serve in a cute bowl and sprinkle grated cheese on top. The chef I got this from also garnishes top with chopped green onion and bacon bits but I leave this off for my son.

Hi Steve,

What a coincidence the buffet I'm talking about is in Virginia Beach. It's the oldest and biggest one down there so I'm sure your son knows it. There's a big antique dive suit and stained glass on the ceiling. My 13 year old nephew thought it was awesome.

You're right that going for speech therapy can give a mental boost, that's exactly what happened with Jack. He didn't need too much but enough to establish a home exercise program and feel like he was taking control of the situation.

Jack said to tell you that speech therapy made him more aware of the functions of the inside of his mouth and how doing certain things changed his ability to speak and eat. Same with the therabyte.

Before the diagnosis and surgery he never thought about how the tongue or soft palate worked, just something he took for granted. This helped him understand what he was dealing with. I think he also needed something to be motivated about once the treatments ended. You go from all this intense activity to waiting around to see if it worked and that made him nuts.

Onward and upward. We ran into someone we haven't seen since June and they commented on how much better his speech sounded. Those are the moments that keep you going.

Regards JoAnne

Thanks JoAnne for the insight. I'll have to ask my son about the buffet next time we talk. He loves seafood as well so I'm sure he has probably heard of it or eaten there. He's been on two different subs ported there on two seperate occasions. We've visited a few restaurants/buffets when down there, but I don't recall visiting one like you are describing. Both my son & I love to cook (a curse for me right now!!) so we grill/cook at their home a lot when we visit, otherwise we would have probably uncovered it. We will search it out next trip. (which hopefully will be soon)

Jack is so right concerning taking the workings inside the mouth for granted. (Oh, the small stuff we overlook!) I appreciate the insight and am going to talk to my ENT about therapy this coming visit in a couple of weeks.

Ann-Marie, I'll have to give the crab salad a shot very soon. I think I'll wait a while on the Potato Soup though. The reason being a few weeks ago I gave some cream of Chicken soup a shot. The milk in it really burnt and stung! Well, I got brave last night and since things change daily I decided to give some cream of potato soup a shot. I did get about a cup of it down before the burn got to be too much!! It's weird how things react differently. I can handle small amounts of cereal (in milk) but not things like the cream soups. Speaking of seafood I actually just had some cheesy tuna helper!!! Woohoo!! Most folks would not really view that as seafood but I'll take it.. LOL

Thank you all,

Steve

Hi Steve,

Absolutely cheesy tuna helper counts as seafood, and if you can eat it then it's gourmet. The name of that buffet is Captain George's. That's a big Navy area, we went to the maritime museum down there and there were a lot of ships in port. Very impressive place. Is your son also a diver by any chance?

You'll get back on that grill sooner than you think. Jack is the cook in our family and those were dark days when we were relying on me for food. You know it's bad when he'd rather do tube feedings. Tonight we are eating a nice beef stew that Jack made in the crock pot and it does feel like we're getting back to normal.

By the way, the Easy to swallow, easy to chew cookbook on the products link of our website has some good ideas if you're interested. It's on the home page.

This too shall pass.
Regards JoAnne