And no Angelia,, Barium swallows aren't bad at all.

Angelia,

I asked for the speech pathologist myself. Where I speak OK, I made a living talking basically and do not feel confident trying to return to "business as usual" until I get my speech issues dealt with. I also new that if I wanted to eat like I used to, a must now that I'm working out again, I'd need to get help with swallowing.

Eric,

I wanted to ask you if you use a PEG? I noticed your comment about Aly's tamales on FB (yummy!) and didn't realize you are eating by mouth. How much can you eat in one sitting and how long does it take? Can you eat just about anything? Was it always like that or did you have to work your way up with different foods/textures?

I see my speech drs at MDA in 2 weeks with another MBS, I feel like I've hit my best with trying to eat and its not getting better. It's only been a little over 4 months since tx ended so I know its still early, just getting discouraged, I'm hungry!!LOL

Elizabeth,

I did use a PEG for well over a year but had it removed about 9 months ago. My diet right now consists of mostly Ensure Plus (chocolate!) as eating is still rather difficult.

I have limited tongue mobility and can only chew on one side...and that side I have problems "pushing" the food to. Once the food is chewed the hard part of swallowing begins. I find I can get most things down if well chewed however it takes a lot of liquids and the process takes painfully long. Due to the facial paralysis my face get's tired after long bouts of talking or chewing. The whole process is rather tiring so there are times when I just rely on a shake because I don't have the energy to try.

I can't "bite" so sandwiches are out and breads unless really "soaked"...if I can get it in with a fork or by hand in pieces then I can "flush" it down with enough water. I tend to stick with softer foods and easy to chew. Meats like chicken are hard for me, white meat especially, but red meat (yay!) and dark meat I find I can get down. The tomales were shredded pork, very moist and accompanied by Aly's homemade guacamole (heaven).

One of the biggest issues I have is food getting stuck in the paralyzed side of my mouth so I have to brush and rinse. I also get the "dribbles" as my lower lip "droops" on the right side and doesn't completely close, so eating and drinking can be a messy process. I have found that since my nerve graft to repair the facial nerve that I do not dribbble as much...but I still wear darker shirts and shy away from eating in front of most people.

I've had to really pick up on eating more solids however, since getting off the pain meds and exercising more my appetite has soared and I'm starting to put back on some weight. The picture currently on my Facebook page is a little misleading as it was taken almost a year ago when I only weighed 140lbs. I have it up for dramatic effects so my friends can see what OC does to a person and motivates them to vote for the Pepsi grant. I'm currently at 185 and look much different.

Anyway when I first started trying to eat, it was much harder and as I've kept at it I've found ways to overcome various issues...but there are still things I just can't eat (burgers, pizza, sandwiches). What keeps me from getting discouraged is the people like Jim, Christine and Charm who can't eat anything, so I find it to be my duty to eat things for them. That sounds funny, but I had a thread last year when I started to eat solids again, however I hated trying to eat in public as I would get stared at quite often. Jim put things in perspective for me by saying if he could eat anything he wouldn't mind the stares...in fact after looking at him they would probably feel so bad they'd buy his meal.

Keep at it Elizabeth, you'll get there. When you're ready I'll ship you some tamales!

Eric

Heck yeah on the tamales Eric!

Thanks for the info! I totally relate to some of your issues, I can only chew on one side too and biting something is hard because I can't feel the front right side of my teeth. I actually was trying to open something for the girls and couldn't so I naturally went to use my teeth to open it and was shocked when it just wasn't happening!LOL

I get tired of eating after a while but what makes me stop sooner is the pain I get on my good side of my jaw, it tends to lock up and not want to stretch. I use to have the dribble problem too but it has resolved.

I can't wait to eat meat! I think I could eat more things if I didnt have to wash it down with something because I don't have the greatest control of trying to swallow the chewed food with the liquids in my mouth at the same time. While trying to swallow, the liquid tends to make me choke because it goes down too fast before the food does.

I too need to just be thankful for being able to eat something and thankful that I'm just alive. Thanks for the reminder, I need to hear it to put things back into perspective.

Elizabeth,

It's ok to be frustrated and to voice it here...if you can't bring your issues here where you have people that can relate to you...where can you? It does help me cope to know that there are others that have had a harder road then I've had.

You really are doing remarkably well for how long you've been out of treatment. I too had jaw pain on the good side of my jaw, it's gotten better.

Keep the great attitude

Eric

Eric, Im glad you are doing so well. Your eating is really coming along!!!! Great to see someone who has struggled so much and now is finally starting to improve. Im still the best chocolate pudding eater anybody ever saw Now if it were only nutritious.

eric-im glad to hear of the positive experience with the dr. u deserve some good experiences!

christine--its ironic how u didnt lose ur taste for chocolate. thats one of the first things that went with andy and he used to love it, more than me, and that is saying alot! eat some for me!

I drank yoohoo thru my first round of OC. Even with radiation messing up my taste I still drank it. It felt soothing to my aching throat.

Christine,

I'm a pudding eater myself, sadly chocolate has lost some of it's luster for me so I'm a banana cream pudding guy myself. Ensure is the only chocolate that tastes decent for me and it's sort of tragic as I loved good chocolate before.

Thanks for all the well wishes, it's good to be feeling good again, gaining weight and eating real food (somewhat). I'll take the improvements over the alternatives anytime.