I'm doing a separate post on this topic. What are suggestions other people have for getting along without a tongue? After over 60 years of speaking and eating there is some frustration. The feeding tube isn't as annoying as not being able to speak. We are mostly using a dry erase board and communicating with writing. Any ideas would be appreciated.
Lowanne

Hey Lowanne,
Did they take all of the tongue? My hubby had a bit more than 1/3 removed. After a week in the hospital and weeks at home until the tract hole closed up, he was able to talk pretty plain. A little trouble with d's and t's, etc. That got better, but now he is 8 weeks post chemo/rad and says his tongue feels like it's healing again and he has started having trouble with d's and t's again. We used the dry erase board also...frustrating when Dan was too sick and high from the meds to write...he just scribbled and I would have to guess his need...I told him I was never good at Charades...we got some laughs out of my guessing!!
Take care and God bless,
Debbie

Hi
You need to down load some free softwear from [URL=www.readplease.com]... converts text to speech.. easy to use.. even I can use it.. it comes with a choice of voices.. I haven't had to use for real yet!!!.. but my husband is blind and we don't do notes... :rolleyes:
hope it helps
Helen

Hi,

Two survivors in our UCLA support group also have no tongue and over the two years learned to talk and we understand most of what they say. They have had speech therapy lessons.

Perhaps this is a way for you to go. Also, one of them does not use a tube but has learned how to swallow without getting it into the lungs.

Good luck!

Howard

Lowanne,

I have almost no tongue and the dentist I went to at MD Anderson prepared a palatal augmentation that lowers the roof of my mouth so that my flap can reach to almost the roof of my mouth and I can make some of the sounds I used to make. Does this person have a flap? If so, you might want to check into this.

I am six months post surgery and having trouble eating, but feel like I'll be able to eventually. My problem is the opposite, I hate the feeding tube and can speak pretty plainly.

Let me know if you have any other questions. I would love to help you out in any way I can. This forum has been so helpful and supportive to me. I would love to help out some others for a change.

God Bless,
Lynn

Thanks all for the suggestions. He has a flap for a tongue put in during the reconstuction. When he is able to plug his trach he can make some sounds. The speech therapist says she thinks she can get him speaking some. He is so conscientious about doing therapy that he'll talk if anyone can in his condition. There was an ad in our local paper for Speech and Hearing Week. They mentioned many differnt assistive devices for communicating. I'll give the numbers in the ad a jingle when the week-end is over. The one that lets you use a phone seems especially handy.

Thanks again.
Lowanne

Lowanne,

I'm so happy he can make some sounds. This is great news. The road won't be an easy one, but with determination he can do it.

Lynn

We saw the surgeon and speech pathologist last week. They suggested a palate augmentation also Lynn. They also are setting us up with an appointment for some assistive devices so he can use the phone and do some conversing with a computer. I think it will be next week when we can get this appointment.

Lowanne,

I hope everything goes well. I'll warn you that the impression part of the aumentation fitting made me gag and I threw up. They put a mold in your mouth that makes your mouth very full and since surgery my gag reflex works almost too well. If I had to do over again I might ask for something to calm me down. The mouth piece makes a huge difference in the way I talk and sound. I am about 98.5% understandable with the prosthetic and 91% without it.

I may have stated before my biggest issue is eating.

My thoughts are with you guys.
Lynn

Jack says he is sure the flap they put in for a tongue is sewed to the bottom of his mouth. I'm not about to go digging around and find out. If that is the case, it's no wonder he isn't able to move it at all for articulating. He is sucking on a sucker about once a day to get some motion and to see if he can swollow a little. Surprisingly there are still taste buds working since he can tell the flavor of the sucker.
Lowanne

Lowanne,

Jack is right. The flap is sewed down to the bottom of his mouth. If he has any tongue left at all then he'll be able to talk. It won't be that clear but you'll be able to understand him. The flap is really to keep him from aspirating, but will aid him in speech and possibly swallowing later down the road. I drink liquids very well, but eating solid food is another story for me.

I'm glad he can still taste some. The little things are what can pull you through some days.

Hang in there!
Lynn

Hi Lowanne, I had my tongue removed in July 2003. I had the feeding tube and trach for 8 1/2 months and had them both removed on April 1, 2004. Although I'm not eating solids yet (hopefully will take up that challenge some day), I am able to swallow well and can take in enough liquid supplements (Boost Plus for example) to maintain my weight. I also had a prosthesis made for my mouth which lowers the roof of my mouth nd am about to finish my speech therapy (after about 3 months or visiting once a week). I have floored my therapist in that I am able to make sounds (words and letters) that according to the textbooks I should not be able to make without a tongue. So there is hope! It's a LOT of work but well worth it. I'm back at work (I work in an office with lots of people) and I haven't come across anybody who can't understand me. Sometimes the word I want to use is hard to pronounce so I substitute it for a word similar in meaning which is easier to say. As I mentioned, I'm not eating solids but if all I'll ever be able to take in is liquid nutrition, so be it - it could be worse! Tell your husband to hang in there! Hugs and good wishes, Nancy

God Bless You, Nancy, you are doing awesome!!!!

Jack is encouraged by the comments from Lynn and Nancyt. He knows it will be a long haul, but with this cancer he will feel fortunate to be around for the long haul. We are still feeling positive and optimistic.
Had another problem with being tongueless the other night. It blood sugar was low for the first time with him not being able to swallow glucose tablets. We had some crushed and ready to put into water. They didn't want to dissolve. I added some plain sugar and got it through the feeding tube. His endocrinologist said to try the glucose that comes in a tube next time. I hope there won't be another episode. He hates the glucogun...nauseating.
Lowanne