Hello it has been a while since I have posted on this site. There are many reasons for this, the main one is that there are so many on here that it seems that some of us just get ran over--not on purpose--but so many people needing answers...I find myself there right now. I need to talk to those who have had jaw replacement, with tongue removal. PLEASE!!! I am having so many things that are happening that I would like to know if anyone else has had the same or simular problems....Please email me at [email protected] talk to me on here is fine......Thank you so so much....Miss Vicki...
1989/Tongue cancer/half removed---1999/Tongue cancer/radiation.2003/Tongue cancer/radiation implants.2004/Jaw Cancer/rightneck disection/85%tongue removel/trech/feeding tube..

Hi Vicki,
I have wondered over the past weeks how you were doing.
Is it your jaw that is giving you trouble or the fact that you are missing most of your tongue? I had jaw removal but no tongue surgery. I also have a part of my tongue that rubs on my back tooth and by night it hurts to talk it's so darn sore. But, I swallow quite well although I do cough way more then the "normal" person would during the course of a meal. I don't have issues with what I drink coming out of my nose. I do always feel a scratchy, irritated feeling in the back of my throat when I am eating and my ears itch ALOT.
I wish I could offer more to help you. I'm glad the trach finally healed for you.
I hope you get some good answers to your questions. Keep your chin up, you have been through much more then most of us on here.
Take care,
Minnie

minniea, my Jaw is always so swollen. No ones seems to know why that is. I look like a chipmunk. STILL!!! I have sent you a email I hope you don't mind. I have so many things wrong it seems,,,I really didn't think that I would have after all this time...It is sure getting old I will tell you that.....Thank you so much for talking with me.....Appreciate it....Miss Vicki

Vicki, it may not be swelling as much as it is drainage issues. I had surgery to help my "puffy" look and it's much better, but I still have an area where my new jawbone is that is larger then the other side of my jaw.
Also, the flap (i think that's what it's called??) that the doctors did is larger then it probably needed to be. While the shape of my "new" jaw is pretty darn close it almost looks like my doctors put "to much" in the other side to replace my lost jawbone. I am going to have just one more surgery to take care of that and then I will be done.
Hope this helps and I sent you a private message also.
Take care,
Minnie

Thank you so much..Vicki

Hi Minnie and Miss Vicki,

A few months ago I was curious too about minnie's jaw work. My docs were looking at a possible bone graft to my jaw (mandible). Fortunately, I have healed a great deal since September and am no longer facing possible jaw surgery.

I don't know if my experience can help with your questions Miss Vicki. I had 1/2 my tongue removed (scc on lateral tongue), my jaw was split during surgery and the bone has not fused together yet. I had some trouble with infection where the jaw was split, and my jaw/chin line on the side where the neck dissection was often puffy or red. My husband commented on how it changed daily. It usually is evening when I notice the aches and speech difficulties.

This fall I underwent hyperbariac oxygen treatment (HBO) and starting taking trental and vitamin E and I am doing so much better now. Before I would not have said I was in pain, but once it went away I realized how much "discomfort" there constantly was to my jaw area!

Let me know Miss Vicki what some of your concerns are (food? speech? upcoming surgeries or treatment, pain? etc.). I also have speech and eating issues. Somes days I am frustrated by them, on others I am thankful to be alive and to still be able to eat and talk, even if its difficult.

It sounds like you've gone through a lot, so I may not have much to add but, if I can help....
michelle

Hi again Miss Vicki,
I saw your other post after I wrote the above note. It seems like the frustrating part for you today is not being able to swallow or eat. Water is a problem, how about more solid/think stuff like yogurt, quiche?

I've got 1/2 a tongue so some of this tips may not work for you. I can see how water coming back up your nose is a problem because I think normally the tongue helps to "seal" off that connection.

Sometimes to swallow I do what I call my crane neck (think of a long-necked bird swallowing fish). I lift my chin up, staring towards the ceiling and gulp the food down.

Without full use of a tongue I can't chew food very well and move it to the back of my mouth to swallow. I need a "pusher" - usually a spoon or fork to place the food in the right spot so I can swallow.

I need lots of liquid with a meal - usually 2 or 3 16-oz glasses, otherwise I can't swallow the food.
I can't eat finger food: 1. because of my split jaw it is hard to bite into foods, so instead I cut things up into very small pieces, and 2. I need that pusher (spoon or fork).

I think thicker/denser drinks like milk, soy milk, boost or ensure, or milkshakes may be easier to swallow, in some ways, because they are heavier and slide down inside of flowing fast,if that makes any sense(maybe I'm just imaging it).

good luck, and I'll try to think of more techniques. (If this doesn't help you Miss Vicki, perhaps it can help someone else out there.)
michelle

ps I can relate to the feelings of frustration. At first you fight the cancer, then you're glad to be alive, but then comes the reality that your life has changed. Things aren't the same as before. Things we took for granted - like speech, mobility, EATING!

ps my trach scar (from the original hospital stay) continues to get fainter. I was surprised considering some of my other, bigger scars that it seemed to heal slow (it seemed to "pop" open and ooze more since there were no stitches holding it in place.

when in 2004 was your surgery?
good luck,
michelle

Miss Vicki, I am sorry you are going through so many difficulties now. It seems that Michelle has some great practical advice. Have you considered working with a speech therapist as well?

I thank you so much for ALL of your suggestions. I am going to try some or ALL of them..I had my surgery Feb 14, 2004. This is my 3rd fight with CANCER. This is the worst out of them all, of course. I just don't understand why my mouth WILL NOT open up. I mean they made me a jaw to replace the one that they took out, you would think that I would be able to use that DAMM thing. It only makes sense to me.....I have asked and begged my team of Doctors to only get the same ole answers,,,,it just takes time...But then I think HOW MUCH TIME??? It has been over a year and YES I am doing 400 times better than I was this time last year,,,but I want to do ALL that I can to recover to the best that I am able to. I don't think that is being ignorant. I have been to a speech therapist who was more interested in all that was done to me than anything else. I was the one that was telling her about things that I had come up with to help myself. I went to 3 different ones,,,,,I learned the most from others like you on here. They were not that much help for me. I want off this PEG. I know that there has to be a way for me to eat. Just has to be a way. I miss food so so much. It has been over 2 years since I have had anything that I could call a meal. My Doctor's tell me that I should be eating by now,,,,WELL Okay but how? Tell me how to do it. I can't open my mouth wide enough to even put anything in there. Then once it is in there what do I do with it. LOL. I have tried with puddings, watered down, nothing. They just lay in my mouth. Then when I try to push it on down with water or milk, LOL,, talk about a mess!! I choke almost to death....It is very very scary for me as well....I have come so far for this to be it....It just can't be it...I refuse to accept that I will never eat again....I just refuse to accept this.....Keep those suggestions coming....I need all that I can get.....Thank you....Miss Vicki.....

Please all those that can help me---read my earlier post and give me all the pointers and ideas that you can. Thank you so much,,,Miss Vicki