Hi everyone!.....I'm Jill and I was diagnosed with tongue cancer about 2 years back.I had surgery(total glossectomy),flap construction,neck dissection and 6 weeks of radiation for some positive nodes....the entire package!!!!
Surprisingly my speech is not that bad and though I'm on a semi solid diet,I try to find new recipes and actually enjoy my food.My fitness level is great and my weight which normally averaged 50 kgs for many years has actually gone to 55 kgs after cancer.
I wanted some information on a tongue prosthesis.......if anyone's got one made,please could you share your experience as in if it really helps in eating a solid diet or how it affects the speech & etc

I have not heard of anyone with a prosthetic tongue, but have talked with many patients that have had a muscle graft from another part of the body to the tongue after their glossectomy. The success of this path of reconstruction is heavily driven by how much of the base of the tongue is left. The graft is viable, living tissue, but without the nerves that allow a patient to control it to any great extent. If a significant portion of the original musculature of the tongue's base is retained, the patient is able to lift the anterior/front part of it, assisting in some speech sounds, but not offering much help in eating/swallowing. One of the tongues main functions of course, is to move a bolus of food to the back of the mouth for swallowing, and one that is mainly being controlled only from he posterior portion doesn't perform this task very well. Much of this is also dependant on physical therapy sessions to learn to manage the grafted tongue properly. Congratulations on your 2-year survival, and what is clearly a good attitude.

Hi Brian!
Thanks for replying.
I'm guessing that the muscle graft you mentioned is the free flap reconstruction( sorry if i sound daft but I'm still not familiar with the medical jargons as I ask my doc to explain in the simplest way possible}.
I had muscle taken from the thigh for free flap reconstruction after the total glossectomy but due to infection they had to redo it within few days & after the muscle was taken from my right breast.The flap doesn't move & it's actually just like a flat fixed base.
The prosthesis I've heard about is like an attachable/removable device.my oncologist,radiologist & reconstruction surgeon all have different views regarding the benefits of that prosthesis & I'm confused if It's worth trying out or not!!

Love Jill

HI Jill,

I had about the same package as you in Feb 04 except mine was a subtotal glossectomy (some tongue base left that allows me to taste) and some pharyngeal reconstruction. My flap was taken from my forearm and is sewn to the floor of my mouth. I asked my ENT about freeing up the flap thinking I could get it to move, but he was quick to tell me it is NOT a functional tongue. I did find out from a post here by nancyt about a palatal drop mouth prosthesis that lowers the upper palate and assists somewhat in speech and swallowing. You have to find a maxillofacial Prosthodontist for this. It has helped but does NOT replace what a mobile tongue does. I have searched all the sites and med journals and have found nothing like what you are referring to.

My speech therapist insist I use a large syringe to force food back to the rear of my mouth where I can swallow OK. I passed the barium test last year, How are you managing a semi-solid diet without a syringe and a mobile tongue? I am still on a PEG for most of my diet of ProBalance supplement and am trying to take more by mouth syringe and less by PEG to eventually get weaned off.

A friend found an article in July 2003 about a guy in Austria who had a successful tongue transplant but have read nothing since. Don't know he is doing long term. Nothing in any of the US med journals that I can find. Good luck in your search and continuing recovery!

Jim Haucke

Hi Jim!

I've not heard anything about an actual tongue transplant but will definitely do some researching on it. About 2 years back, my reconstruction surgeon did mention that it's definitely a possibility not to be ruled out, in the near future.
Your case seems very similar to mine.....my flap doesn't move but I can manage semi solids very well...they removed my PEG within 4 months of surgery & i've never used a syringe.... I started with soups but now easily manage thick gravy....I can eat spaghetti or even boiled vegetables as long as it's chopped into small pieces & in some kind of sauce or gravy. My favourite is vegetables in sweet & sour sauce mixed with noodles & fried rice...all I need to make sure is that veggies are soft & there is extra sauce.
My teeth are intact so I actually chew using my front teeth but not everything gets chewed properly...i think the way it works is that the food gets trapped between the front upper teeth & front lower teeth...i use the upper teeth to chew & crush it while holding it behind the lower teeth but ofcourse some of the food escapes & goes to the rear but as long as it's soft & no big pieces there's no fear of choking & I just swallow everything (mostly the chewed stuff & remaining few pieces). For the swallowing I use the remaining (I think there's not much of it) back part of the tongue (not visible in the mouth) to gulp food from the front part. It

I have described that same thing or way of eating. I keep putting food in & it pushes the stuff in the back far enough I can swallow it easier. Keeping the hopper full so to speak. I had 60% of the right ressected & free flap from forearm. It just gets dragged around by the remaining 40% & sometimes it gets pushed up between my molars & I chomp down on it when I'm chewing! It does not have much feeling in it, but I do feel that! Stings!!

I was blessed to only have 25% of my tongue removed and an alloderm graft from under my tongue on the right to the floor of my mouth. This creates a pocket which sometimes catches pills that are discovered when the nasty taste fills my mouth and I will occaisionally rediscover bits of apple, popcorn, etc. My doctor calls it my pouch, to save a little for later!

It is an oddity that makes eating take longer for me, and if I am eating and talking at the same time my family finally tells me to shut up and eat or they impolitely leave me at the dinner table!

I admire you both for your ability to nourish yourselves appropriately, and the ingenuity you've demonstrated to do so. I feel humbled for having my pity parties when I get left at the table.

Thank you for the interesting and enlightening thread!

Sincerely,
Lisa

Hi Jill, you have an awesome attitude! I had more than 50 percent of my tongue removed and replaced with muscle from my arm. Anyway, I do remember reading about the tongue transplant patient in Austria but nothing of late. I hope he is doing well. God Bless and Keep up the wonderful attitude, it does make it a bit easier. Sorry I couldn't be of more help to you. Love, Carol

Hi Carol!.....actually you were of great help to me.....just commenting on my awesome attitude helped to add on to my determination of keeping it up...thank you...love Jill