I got reconstruted tongue,and my tongue lost the sensation, and do not pick -up the food , so do somebody can told me , what will be next for me/ do I will be able to eat, because I already loose all my teeth..thank you.

Hello Muriel

Welcome. Though each one's experience is slightly different, you will get get an idea of what to expect from the patient stories on the MCF website. Do tell us more about your cancer and treatment and problems and we will all try to help you as best we can.

Best wishes
Vinod

Hi Muriel

Sounds like you had the pretty much the same surgery I did. You probably will get increased sensitivity in your tongue flap, but it will take time. (I'm three years post op.) After my nasogastric tube was removed, my doctors had me wean back into solids over the course of about a month. I drank a lot of Boost, Silk (soy milk--usually vanilla), and had at least 3 jars of baby food for each meal for a while. Early on, I actually considered gravy to be a food group. Those days are gone, but I still like potatoes and gravy.
You mentioned that you've lost your teeth. Do you wear dentures? You might want to contact your dentist to see whether you might need either a new set (or at least a new bottom plate to accomodate the new tongue), or an adjustment.

The best advice I can give, Muriel, is to be patient. This is some pretty major surgery, and your tongue will heal in its own time.

This message has been edited. Last edited by: Julia,

good evening Julia, I was very please to see somebody taking time to write to me, my English can be off sometimes, so sorry , french it's my natif language ,but I thank you for your kindness and hope, Yes < I have dentures made just before surgery> but my tongue it's still swallow, patience , it's not a vertue to me, and I like to go on always in my life , so I traine myself by wearing those dentures, first 5 mn then increase and now go out and just tonite eat with , very hard but **CAN BE DONE**.my tongue it's numb, and the food stay right on the front , so I pouch it with my finger , way-up where the left over of my real tongue is and then have taste and finaly swallow.big exercise.I eat most soup and soft desert, a lot apple sauce ,jello and things like that. did you have tongue cancer and reconstruction? how you doing tody , I very wishe to you a nice evening and hopefully talk to you soon again.Muriel

hi muriel
welcome to the site,i am happy that you can manage to eat something how are getting on?are still having treatment?keep us informed of your progress we are a friendly lot of people on hear,looking forward to seeing your posts.love shirl xxx

Bon jour, Muriel, et bienvenu! (Sorry--I've forgotten nearly all the French I learned in high school.)

I am a tongue cancer survivor. Three years ago, the left side of my tongue was removed and rebuilt with a piece from my right arm. So far everything's going well and I'm still cancer free. How long has it been for you? Did you need radiation and/or chemo? I'm one of the lucky ones--I only needed surgery.

Take your time when it comes to eating--it's not usually a competition--and don't take big bites. I was always worried that I would stab my flap if I used a fork, so for a while after I went back to solids I ate everything with a spoon. One odd instruction I got was to tilt my head toward my natural tongue side when I ate. It was awkward, but it seemed to help.

Julia

Good morning Julia, I believed in God , and I believe he wanted I meet you, bonjour Julia,and I'm very happy to meet you, You have exactly what I'm going through , my surgery was the 11 of April , mean 4 weeks ago, and I have so many question, I just hope , it will be not over warming all my questions, I just see HOPE through you and cannot help to think at all my question and the unknown I 'm going through now, so my first question , will be:how long it took to you to heal , most your tongue, I start to eat , with my teeth, and I'm scare because where the 2 tongue meet , it' seem it's not healing well yet, I'm so scare they go on part, it's a little red and I just don't know, + the stiches , they are in the way too, but those will be not removed so I don't know when they will fall off but , I don't like to see that either, I'm scare of my tongue and of course still swallow most in the center, I trial to eat or drink and yes I have to put my head back or like last nite for the first time I tented to eat a real meal , humbuger very juicy and I needed to pouch with my finger gentle of course on the side and I can feel there flavor and swallow from there.I cannot use the tip of my tongue, the food slip back right there, and it don't matter how hard I trial it stay there..do this will go away?, can you eat steack , go out diner?, did you have lympes nodes removed also in your neck? can you use well your arm?they did it on me, and right now, cannot do much with my arm or my tongue,under my tongue it's to short not like before so my tongue cannot moved up and done, do it's the same for you ? or when the swallow will be gone , I may gain some space or more movability. I very hope you can read my poor English, and thank you so much for your mail.. # years, for you , that it's great news, I do not have radiation or chimo either, the surgery was a sucess, they recommand some radiation but they say , it's hope to me, so no , I don't take this option, do you work , and can I ask you a old are you, I'm 48 maried , no children, love them and did cry my all life but I have also a hysteroctomy, so no kids ,and I live in Massachusetts, and went to Boston , good reputation for my surgery, and this was my second opinion, the first contact , was at Bay states and tey didn't propose reconstruction so we went with Boston and also they had more experience and my husband and I , we did feel confortable , right away with them.,I am very very tired , so I'm going back to bed, how it's your energy?, take care Julia , and have a wonderful day .Muriel au revoir et a bientot.

Hi Muriel, I didn't have any surgery on my tongue so dont know how it feels but welcome to the forum. I know some French, enough to get by when I'm on holiday etc. It's a stunning country and a lovely language. All the best, Hagg.

Hi Muriel, Well I lost part of my tongue not to the Cancer but Radiotherpy.
I manage now alot of things exept meat.
How? I push one lot down with the next and so on and the last lot I use water to get down.
you may be heped by Reading John Diamonds book "Cowards get Cancer too"the first one he did, The second not good as it was finished by someone else.
Its a good read and it gave me tips when I read it.
If you have aproblem getting let me know will send you one.

cheers

Paul
Paul

Bonjour! It can take a while for your tongue to heal--it's only been a month, after all. My doctors used dissolving sutures, so I never had to worry about the stitches coming out (although they were very sharp and scratched the heck out of the roof of my mouth). Oh, yes, I had lymph nodes removed--fifty of them--and now I have titanium staples in my neck and an interesting scar that runs from just under my left ear to about the mid point on my throat, just above my trach scar (I had a trach for about a month). The only difficulty I have with my left arm is when I try to lift something fairly heavy with it--like my 2 1/2 year old niece who is quite a chunk.

Have you told your doctors about the problems you're having with movement? They might recommend that you see a speech therapist for that. I feel like I lisp if I'm really tired, and if I've been talking too fast, too much or too loudly, I'm likely to get a tongue cramp. That's when my tongue gets kind of stiff, the sensation goes into my throat and I feel like I'm about to get sick. They usually clear right up if I cough hard.
My doctor never presented radiation as an option, and fortunately the pathologist report after my surgery said that neither it nor chemo was needed (seeing a doctor with a surprised look on his face is PRICELESS!). I work at the same hospital where "Flappy" (that's what I call the reconstructed part of my tongue) was born--the University of Michigan Hospital. Not married (most likely never will be), no kids (the world's better off; I can't even discipline my cat successfully).

I didn't have time for a second opinion. I first saw a doctor for the sore under my tongue and the pain in my ear on 12/23/04 and had surgery about 6 weeks later.

Bonsoir Julia, Yes ! they removed 50 lympes nodes , tested 29 and none had a cancer cell, they say I'm a cancer free, but Boston , called their self .( old fashion school) mean before , when you had cancer, removed everything or not, automaticaly they sent you for chimo or radiation just for the SURE, now in my case has like your's, they say, I'm good, 90 % they say but if I want 5 % more I can have radiation, but remember radiation can do some domage and loose some others goodies, so next thursday , I'm back for a check -up and I will have to told them my descision, I'm going without radiation. I'm under a wonderful powder how help me with nutrition, vitamins etc, expensif stuffe , but the nurses can see already the difference on one week on, so I will go this that route. You also ,make me smilecouple times, and that feel so good, I actually realize at that time and touch my lips, feel so good to have some left of happiness. your zapping look like me, from ears to under troat, my tracheoctomy right now, just close slowly, peoples look me in the store , and I feel shame and like a Monster, ( a good One) of course...I find out , also my mouth go on the right, when it's my all left got surgery, it seem like my right got paralysed in the process?. My tongue ,it's very sore tonite, so I removed my teeth out, and will trial to don't pouch to much, yes my stiches it resorbe on theyir one, still pain sometimes.I have 2 cats, and one dog , a very timid and scare dog Lab, they found 6 pups and I got one through the ponds, where they rescues animals.Sam 5 years old, and 2 cats getting old too , over 10 years now, Mr Twister, half Mancoon and Harley a tigger queen cat, very beautiful family.I work for a factory how made optic lenses, from 2 mn, to way big for satelite , pretty crafty and I love it. I just don't know , when I will be able to go back, I have a therapist for speech and for my arm and neck but just started, so we will see. hope they will do not give-up on me.I wishe you a great day, the weather here, it's nice a little rain but in bed with my cats and dog , it don't make a difference right now to me.take to you soon. Told me , how you feel, do you feel differente , the same of before, are you depresse, very tired or not, do you have a regular life ?
you say , you will like be may be never married , you say that because of your cancer or more personnal, I have my best friend here in Mass , she say , she never meet any cool guy , but she never go out, or help a little bit to find mister right, some super guy excist , just you have to look arround you. I'm lucky and that, he and his family was my wonderful support through this tragedy, and you , who was there for you?all right now , I will get quiet and go cook diner for the husband, OH YAH ! that it's your other advantage you have on me, you cook and do things when you want , that it's pretty cool too. Good night Julia. thank's. Muriel

Hi , thank's for your email, yes ! i hope the most tragique part it's over, now, it's healing and cope with handicape and marks( scares) not sure of my grammar* in my face. I have a hard time to accept that part but I know , I will eventually get over , it's just now, I call it surviving. I'm on pain killer , how manage pretty good that and I sleep a lot , not per choice , just cannot fonction like I used too, again times will heal. Depression, yes , I'm , it's why to have friends and family , it's very important, and with you on that site, I believe I will have the best support , because , you went through and understand my fears, and my tears, those , how we hide from our close friends and family because we don't want to show them our weakness, anyway , I'm talking about me, but I care about them and trial to don't called them to often.but yes, Love and talk , it's the best therapy., and I 'm very happy to found this site, where , I will do not have to hide ,how I feel and can ask question, because , you most have the answers, and this it's wonderful.thank you and have a great evening.Muriel

Hi Paul , WOW ! you are from London, I love London, Andy and I went and spent 3 weeks in London , for our Honeymoon, and dream to go again, we just full in love with this city . So how are you Paul, what happen to you? , I know what you talking about poushing with one other, I already put the finger there, and it's that moment I got depress, how down I'm reduce to do things to survive, I don't want my husband arround me, when I clean my mouth or eat , it's terrible, he still say I'm beautiful , it's just to early to accept it.hope to read about you again , Paul , hope you are doing and going well, what it's the most difficult for you to face this life? good nite my friend , and I will look for this book for sure.thank you again.Muriel

Hi Muriel.

We haven't heard from you in months. Are you ok?

Julia

Hello everyone, it's longtime I didn't go on that site, I' m a survivor of oral cancer, and today I have a thought somebody may have question about this specific cancer , like I was a year ago, so if you want , write to me and I will trial to help you through this terrible journey.A Friend Muriel